The Fenske Family

We've Moved

2011-04-07T08:52:00.000-05:00

Remember, we are now at CHAOTIC AND COMFORTABLE
Please bookmark us at our new address, update your blog reader, blog list and/or follow us.

Ch-ch-ch-ch-changes.....

2011-03-01T13:09:00.000-06:00

I started this blog three long years ago to chronicle the, what I thought would be, relatively simple adoption of our second child from Kyrgyzstan. It has, as you know, turned out to be a very long, very difficult process. It has also brought us some unexpected and very welcome surprises. Our lives have taken miraculous twists and turns and we have not only survived, but, in my opinion, thrived! Our little family works. We are changed people, Kevin and I, that is for sure. There are things that three years ago would've been at the forefront of my mind that never even cross it anymore. Our hopes and dreams as well as our goals continue to evolve. That said, it's time to start fresh. I will be leaving this blog (don't worry, I'm exporting it so it'll not be lost) for another. My hope is that it will be a place to share our daily happenings, to keep loved ones updated, to advocate and educate, share our joys and our sorrows, and as always continue with the therapy that blogging provides me. I sure hope you'll join us, add us to your dashboard, Google Reader, follow us, or whatever it is you do. Oh, and as a little incentive, I promise there's something really exciting coming up - but you'll have to come on over to find out about it!!

Our new home is at: Chaotic and Comfortable

See you there!!!!

Hospital admission number.........oh, who am I kidding?

2011-03-01T05:24:00.000-06:00

As if I could actually count how many times she's been admitted - right!

So, we're here again. It all started with a "simple" cold last week. Colds, as I've said a million times before, are not so simple for M. There is a reason I am the Clorox Queen, Germ-a-phobe, Purell Nazi - whatever term of endearment you wish to bestow upon me. Illnesses, no matter how insignificant or minor they may seem to the average individual wreck havoc on M's system. You see, getting sick isn't "good for her" contrary the the advise of so many well-meaning (non-doctor) types that like to give me advice. I took her to see her pedi on Saturday who promptly started her on an antibiotic to hopefully ward off the secondary bacterial pneumonia that always seems to join her following a cold. I should mention that this is her first illness of the very long Wisconsin winter, so we HAVE done quite well. Unfortunately, she had already started into this very unpleasant gag-vomit cycle which continued through the weekend. That quickly lead to increased issues with her already compromised bowels which may have lead to issues with her distal shunt catheter which may have lead to a complete, multiple shunt malfunction. Further testing today will hopefully tell the whole story. All we know for now is that she is miserable, her brain MRI looks awful, her abdomen is distended, her xray looks crappy (pardon the pun) and we could be looking at surgery.

Stay tuned.............................................................

Doctors

2011-02-25T06:00:00.001-06:00

It's been a very doctory week around here. Monday, M had her 4 hour EEG to see how things are looking after the Sabril wean. Wednesday, she had her swallow study to try and get some answers about her previous aspirations and constant gagging. Thursday, E had his sniff...sniff...FIVE year old well child check up. How in the world did he get so old???? We had to bump it up from May because we needed "well child" letters for our updated homestudy.

EEG went well. We had a really good tech who was super fast at getting her all hooked up. He asked if I was okay with the ~~crying~~ screaming and if I wanted him to just "get it done" and I appreciated that. In my experience, the more you try and fluff kids through stuff, often the more anxious and upset they get. M HATES having her head touched (geez, I wonder why) so EEG time is her least favorite time. She was completely wired, wrapped and calmed down in under 20 minutes - a record, for sure! We hung out for four hours, she ate, napped like she was supposed to, played, had some seizures, and then we unhooked and went home. Unfortunately, the results were not favorable. She is again showing an electrodecromental response (classic Infantile Spasms) which means we have to put her back on the Sabril. She is also showing more general disorganization bilaterally and focal activity primarily in the right posterior. She is having multiple sub clinical seizures when awake and even when asleep. We increased her Trileptal, will restart the Sabril and wait a few weeks before we discuss again weaning the Keppra. I'm sad....she was doing so well developmentally off the Sabril that I hate to put her back on it, but we can't let the IS continue to damage her already damaged brain.

The swallow study went fairly well and was definitely informative. They were running behind, which for a girl who was starving was not cool. As it turns out, M has a 5/30 projection fraction. Basically for approximately every 30 times she swallows, 5 times the food or liquid slips under her epiglottis and into her trachea. Each time it occurred during the study, she was able to recover without aspirating, however, this does place her at higher risk for future aspirations. It also seems that it takes her on average three swallows to empty her mouth and throat instead of just one. We will be exploring thickening her liquids and medications and will be feeding her slower and in very small bites. It is possible that during her last shunt surgery in January (since after that is when this all began) some nerve damage occurred to her vocal chords or throat. We'll be talking to her ENT about this at her upcoming appointment in a couple of weeks. It's also possible that her reflux medication dosage needs to be increased since it hasn't been adjusted in over a year.

E's pediatrician appointment was extremely informative and he did such an incredible job! For a sensory kiddo, visits to the doctor are always incredibly challenging. He did awesome - he wore the gown, let her look in his ears, eyes, do his blood pressure and his exam with very little fight. He got 4 shots and was quite forgiving. The nurse brought him a sucker and he said "I don't really like candy, do you have anything else for me?" Overall, the doc was extremely impressed with his language skills, his intellectual ability, etc., but not so much with his growth. I was expecting that. He's gained two pounds in the last two years. In fact, he's been hovering between 29-32 pounds for OVER two years! He is at 41% for height and 3% for weight. She is now concerned so he had some blood drawn to begin exploring the possibility of other underlying conditions. He eats a good amount of food and excellent quality - whole milk, full fat yogurt every day, fruits and veggies, pasta. That said, he never stops moving, either. He is in constant motion! She immediately noticed his "special" twitches and "ticks" as well as his sensory issues and discussed patching him in to the developmental clinic and following up with neuropsych. Off the doctor subject, but on the developmental subject, we have finally won the battle with school over getting him therapy services. His IEP is being written and he'll be receiving SLP and OT beginning soon!

So, it's been a busy week, but feels good to have answers and plans.

M's New Specs

2011-02-14T12:42:00.000-06:00

I truly didn't believe it was possible for her to get any cuter!!

I was wrong again!!

Future Hollywood Makeup Artist??

2011-02-01T12:51:00.000-06:00

I wish I could say that opening my email to find new pictures of K brings me only joy, but it also brings sadness, anger and guilt. In any case, I am still grateful for them. I am grateful that she is growing and finding some moments of happiness in her life. I am especially grateful that she, like her brother, loves to draw on her own face!!

A happy surgeon

2011-01-27T14:19:00.000-06:00

Finally - I get to see a smile on that sweet face of his! I know I have gushed on before about how much I love our neurosurgeon. I was saying to Kevin last night that I sure hoped M was in one of her silly moods when we got to her follow-up appointment today. Her doc has, unfortunately, always seen her at "her worst" and while he is always professional and optimistic, I really wanted him to see what we get to see every day - that is a happy, smiling, sweet baby girl. He was pleased and I think a little relieved, too, that things have settled down for her. Better yet, we got a pass until May when she'll return for her next MRI. She does still have some enlarged lymph nodes, one under her neck incision and one at the base of her skull, that we'll monitor for changes. Hopefully nothing is brewing.

Aspirations

2011-01-20T12:36:00.000-06:00

And no, I'm not referring to my dreams for the future.

Last night we found ourselves in the ER. M aspirated during her evening medications and bottle feeding. This is her second aspiration in less than a month - suspicious. It was a particularly frightening incident, she went nearly a minute without being able to cry, move air, cough or do anything but lay stiff, looking totally panicked. She then began the coughing, vomiting, crying cycle. She improved over the next 1/2 hour, but the after hours nurse talked to the peds on-call doc who wanted her to be seen in ER due to "her complex medical picture." I can appreciate that so we made the 1 hour trip to the hospital.

I'm always amazed by our great facility. It is a University hospital - a teaching facility with a contant influx of new faces - med students and residents rotating through. Still, no matter when we go or where we go we are always greeted like we're old friends. Mind you, we've only been through this ER three times - that's it! Most of our admissions have been through the clinic. Still, last night there were nurses who remembered us, a Child Life specialist who helped us out last time when E was along, and the very same Pediatric ER doc that was on the last 2 times we were there. You wouldn't expect such a down home community feeling at a facility like this one, but we always get it.

Anyway, we were in and out in under 2 hours - a record, I think. M looks good, no obvious problems. We most likely need to follow up with a swallow study, however. I'm hoping this is just an intermittent issue related to her three recent surgeries and not something more.

Videos....as promised

2011-01-18T14:14:00.000-06:00

The boys out on the ice. I just LOVE the joy on his little face despite the constant falling down. He has such determination and spirit! Daddy was so patient, too! :)

THIS is what I've had to deal with for the last last 48 hours straight (except for when she's sleeping peacefully at night)! I know, hard to handle, right? I'm telling you - no naps, no crying, no fussing. I am SO happy and grateful to have my girl back!!

Green Lights and a Smiley Girl

2011-01-17T15:36:00.000-06:00

Just a quick update - I promise pictures (and maybe video if you're really lucky) later on)!

We operate on the traffic light system around here as far as school is concerned. It has been the one tangible thing that has worked for E to monitor and help manage his behavior at school. Green light is a great day with no infractions, yellow light is for minor disturbances or reminders, red light is for major infractions (basically violence or something equally as unacceptable). Last week, having earned four green lights in a row; he goes to school Mon-Thurs; E was able to choose an fun family activity for us to do. He chose ice skating. He has never been. I haven't been since I was probably 13 or 14 and Kevin hadn't been since about that age either. We found a rink close by home that was indoor and had skate rental so we headed out yesterday afternoon.

When we arrived, I asked the owner if it would be acceptable for us to take M around the rink a couple of times in her wheelchair so that we could go at least a bit as a family. He happily obliged and even helped us get her out on the ice. Once on the ice, what we got were glares and sour looks from other parents and even one jerk that kept skating by saying, under his breath "you know, that's against the rules." We saw him go over and talk to the owner a bit later. Anyway, after a trip around, we just took her off and I stayed back with her while the boys went out. I get that she is young, doesn't look "obviously disabled" (whatever that looks like) and that her wheelchair looks suspiciously like a really expensive, really trendy stroller, but seriously people - get a frickin' life, we're just trying to be a normal family!! I know, get over myself, get used to it, it's going to happen forever. Still pisses me off, though. Anyway, the boys did awesome. E fell - a lot - but really seemed to enjoy himself anyway. I was afraid he'd be all built up about going, having no idea what to expect and then hate it, but he really truly loved it! Today, however, there are a number of ugly bruises on his skinny, little bum. :(

I'm happy (and a little hesitant) to report that M has been doing incredible these last few days. It seems she is FINALLY feeling better. She has been happy, squealing, smiling, eating and drinking well and sleeping soundly. I was really starting to doubt that this latest revision would be deemed a success, but things are starting to look up for her. This is a huge relief since anything we do from this point forward is going to be pretty drastic and possibly result in further loss of function. We're keeping our fingers crossed.

Bittersweet

2011-01-15T07:47:00.000-06:00

A couple of days ago brought more bad news out of Kyrgyzstan. I'll give you some history in a Cliff's Notes kind of fashion. For the past couple of years, the Kyrgyz Government has stated they wanted a bilateral agreement to complete our pending adoptions. Finally, last fall, the US Govt gave them what they wanted in the form of an MOU (Memo of Understanding). It sat, and sat, and sat, circulated, and sat some more. We received word this week that it was rejected. The Ministry didn't feel the pipeline cases deserved any special consideration and that they should be processed under the Hague when Kyrgyzstan ratifies it. For those in the adoption world, you well know that it takes and ORGANIZED country YEARS to ratify the Hague. A country like Kyrgyzstan, well, let's just say I doubt they will ever get it done. As you can imagine this was a crushing blow to all of the waiting families. We went from believing we were as close as we've ever been to getting our kiddos home to being told it's probably not going to happen.....period.

Rewind to a few weeks before Christmas. We reconnected with a friend currently living in Bishkek. This is an amazing, wonderful woman who makes it her life's work to care for those who cannot care for themselves. We immediately shipped off a little gift for K. I sent it Priority Mail Flat Rate - you know the commercial "ships anywhere for one flat rate". Apparently Bishkek, Kyrgyzstan is not 'anywhere'. It was $42 for the $11 package and it just arrived this week! I digress. Our friend, God Bless her, took the package to K and sent us a few pictures and an email about her. I'll share just a little bit of what she shared with us.

....there was no contest, her favorite gift was your pictures. She couldn't stop looking, pointing, and speaking to you in her own way. I would say mama, papa and she would say "lala" as she pointed to your pictures. I would say sister, brother, their names, and she would always point and speak, never looking at me, but at your pictures. I honestly believe she knows you are her family.......

So, you see, it makes things harder now. She is older. She is aware. She knows about us. She understands that we love her. She does not understand why we won't come and get her. She is not going to understand when another birthday passes, another Christmas, another New Year. She will feel abandoned all over again and we did that to her. Perhaps it would've been better to not send her anything. Perhaps it would've been better for her not to know. Now, I feel a mix of joy and guilt. I am joyful and grateful to have given her this one day of happiness of feeling loved and wanted, but I feel guilty for all of the other feelings that are going to come to her when the days and months pass and we don't show up.

Today I have hatred in my heart. It is an ugly feeling and not one I'm proud of. I can't imagine the how any human being can be so cold and uncompassionate when it comes to innocent, suffering children. Furthermore, the Kyrgyz have proven time and time again that they don't give a crap about their children. If they did, they wouldn't be dying in institutions rather than going to loving families. I think the only thing that keeps me going is that I do believe in Karma. Perhaps that's just as ugly as the hatred I'm feeling, but right now, at this moment, I take comfort in believing that the people responsible for the continued suffering and deaths of these children will pay for it with their own suffering someday.

Self Censorship

2011-01-12T14:18:00.000-06:00

I started this blog back in, oh 2008, I think, solely for the purpose of chronicling our second adoption from Kyrgyzstan. I suspected that adoption process would conclude in late 2008 early 2009 and really hadn't thought ahead to what would become of my little blog. Well, as you know, a lot has happened in the past three years. Our second Kyrgyz adoption is STILL in process and our first domestic adoption occurred in 2009. Our lives have changed more than I ever could've imagined over the past three years. We have had experiences I never anticipated. We've learned more than I thought I could learn about things I never even heard of. As a result, this little blog of mine has morphed into much more than just a place to record an adoption journey. It has become a place to vent, to share stories, to preserve memories, to keep family and friends informed, to share knowledge, to facilitate connections, but perhaps most important, it's become a sort of therapy for me.

Over the years, my readership has expanded to include not only close family, friends and total strangers, but coworkers, acquaintances, virtual friends, community members, and service providers. As my readership has expanded, I've noticed myself "toning" down my posts a bit more - self censorship of sorts. I find myself typing along, then suddenly stopping, thinking, wondering "what will so and so think if they read that" and ultimately hitting delete. I have ~~stalked~~ read a lot of blogs over the past few years and am always awed by the writers that are brutally open and honest. I am inspired by the women that have the balls to put it all out there and not care what others' think of them. I wonder how great it must feel to just be able to do it and go about life knowing you've said what you've felt and have the peace that goes along with that. I often wish I could do that and then wonder, why can't I? Who says I have to be proper all the time? Who says I have to worry about hurting someone else's feelings? What about my feelings? This is MY blog - no one is forced to read it. Why can't I be one of those ballsy people who just let it all hang out? Perhaps there's one person out there who would be inspired or touched by something I've written. Perhaps there's one person out there who really needed to hear it! So, my blog-resolution for 2011. I'm going to try - really hard - to keep it real here. If your a regular reader who doesn't feel they want to know me THAT well, you may wish to tune out for a bit.

Home Again

2011-01-05T16:42:00.002-06:00

and so glad to be!!

Aspiration Pneumonia

2011-01-04T18:33:00.001-06:00

We will gladly accept it and deal with it! I know it's slightly twisted and a little sad that a huge smile crosses my face when the diagnosis is delivered, but anything beats shunt infections! The shunts are still not deemed perfect, but her pressures are down some and CSF infection has been ruled out (YAY) so we're going to wait another 24-48 hours to see what develops. Hopefully the ventricles will start to decompress and we'll begin to see our Dolly returning to us. AS was the case yesterday, she had some immediate relief after today's shunt tap and now (several hours later) things are starting to turn uglier. Here's hoping tomorrow brings more comfort and healing M's way.

Oh, on my quest to live a healthier 2011, I've abandoned my hospital cheesy potato addiction and replaced it with a ~~not so~~ much healthier one: De-lish-us brand popcorn. At a buck a bag it's pricey, but oh so worth it!!

Update

2011-01-04T10:32:00.000-06:00

M had a horrible night, probably the worst one on record second to her hemorrhage last Feb. She was inconsolable, pulling her hair, confused, had a temp of 103 and a very "junky" cough. This should've been her easiest surgery ever, but her recovery has been terrible. I suspect her anesthesiologist was either a sadist or pissed that she had to work late because M's throat is just trashed. Now it's impossible to know what's neuro and what's throat related. The neurosurg resident on call overnight didn't really want to walk her happy ass over to see her at midnight and just wanted to order some narcotics over the phone. Sorry, not good enough for me. Narcotics cover up neuro issues - DUH! I wanted it documented that she was SEEN even if this chick didn't have a clue what to do with her (which she didn't). So about an hour and a half later she showed up and remarkably M had screamed herself to sleep and looked very peaceful at that time - go figure. She decided we should "watch her" until morning. Anyway, this morning, her fever is down and her irritability is slightly improved. She still has the cough and the junk and continues to pull her hair. Her neurosurgeon feels this could all just be related to pain and wants to just see how the day goes. She did have a CT an hour ago and some labs were ordered 3 1/2 hours ago but not yet drawn! We shall see what those things show and how she does today. I really hope he's right although she's never responded this way or had such a difficult time bouncing back so I fear something bigger is brewing.

Surgery....yet....again....

2011-01-03T16:35:00.000-06:00

I knew it was coming - she hasn't done well since her 12/22 revision, but it still sucks. We (and by we, I mean master surgeon B) have decided to go with a conservative approach. If it works, we will be home free. If it doesn't work, she will return to the OR and we will likely have a longer, tougher road. Either way, I know we will handle it. We have to. I'm praying, though, that just this once, things would go perfectly for M. She's in surgery now so I will update later on.

Holiday Wrap Up

2011-01-02T13:35:00.000-06:00

Well, Merry Christmas and Happy New Year. It appears I'm a bit behind....AGAIN! We've been laying kind of low and keeping things pretty quiet. We did get out a bit on Sunday, Dec 26th, to spend time with family and it was really nice to be able to do that.

New Year's Eve was nice and quiet - steaks and the good company of our closest friends and early to sleep (for me and the kids anyway).

M has had a long, difficult recovery from this latest shunt revision. Until a few days ago, she continued to be irritable, pulling her hair, sleepier than normal and just not herself. She wasn't drinking at all and that prompted some lab work to determine if we needed to do some IV fluids at home. While her labs values were trending down into the low range, her neurosurgeon was hesitant to put her on fluids because of the placement of her Hickman and distal shunt catheter. They sit right next to each other in her right atrium. Friday, she began to turn around and we've seen some smiles, better drinking and a less agitation. She has an MRI, ECHO and neurosurgery visit scheduled for tomorrow morning. We're hoping the news is good, however, we realize that this "event" is probably not yet over. The neurosurgeon felt that, though he was very pleased with the work his partner did, it was probably not going to "fix" all of M's current problems. We're thinking that he won't admit her tomorrow as long as she is doing clinically well. He will likely wait until there is another malfunction to pull out his next trick.

Yesterday, Kevin and I decided to have "date day". We went and saw the Bodies Exhibition which I have been wanting to do since last year when it was in Milwaukee. It was so incredible! If it comes to an area near you, you simply MUST go! We also took in a movie, True Grit, which was way better than I thought it'd be. I'm not normally a Western movie kind of gal, but it was really quite good. We finished the day with an early supper at one of our favorite restaurants and then headed back to pick up the kiddos. Thank you, Grandma and Grandpa for taking care of them so we could have this much needed time alone.

So, it's the New Year. Supposedly one should be making resolutions and big plans. Other than planning to continue to the quest to be a better wife and mom, and trying to improve my health, I don't have much. Of course, I always plan to win the lottery, get out of debt, and buy a new house, but since I don't play the lottery, that stuff is unlikely to happen. My wishes for this year are the same as last year: Good health for my family, friends and especially my kids and for K to come home (preferably before May when everything expires for the last time).

I'll leave you with a few pictures of our holiday festivities:

Christmas Eve 2011

I'm always on the lookout for AA dollies and I stumbled across "Lenore" at Walgreens of all places. I LOVE that she comes with her own Birth Certificate and Adoption Papers.

More dollies - thank you, Grandma & Grandpa!!

Favorite gift of 2010 - A Geo Trax Lights and Sounds Crossing for the massive train set E has!

Grandpa recently got his childhood Lionel train up and running.

This is pure, unadulterated joy right here!

First (and very much enjoyed) serving of banana cream pie.

Happy New Year - 12:00 a.m. Jan 1st, 2011

Should've stayed.....

2010-12-25T00:43:00.000-06:00

We are home and had a lovely evening of present opening. That abruptly changed about 1100 when E started throwing up - all....over....everything. Now I wish we'd have stayed in the hospital. Stomach flu is something M definitely does not need. Looks like we're in for an all around yucky weekend. :(

Merry Christmas Eve!

2010-12-24T13:03:00.000-06:00

From this:

To this:

M is doing well. The morning has been a turning point for her. She's happy, smiling, squealing away - even through her MRI. She's still pulling her hair (hence the hat), but isn't crying. She's peed, pooped, eaten and drank. The surgeon on call consulted with our regular surgeon who is spending Christmas with his family overseas. They are both at peace with what was done and with the current outcome. He feels there are months of healing and waiting ahead, but for now, wouldn't do anything different as long as she continues to improve. So, we're headed home for Christmas - just in the nick of time. :) We have so much to be thankful for!

The Day After

2010-12-23T08:55:00.001-06:00

It was a rough one. Four and half hours in surgery, a moderate amount of blood loss and three shunts later M is resting fairly comfortably. I broke down and had them give her some morphine this morning because she was scratching her face and pulling her hair again. Anything beyond Tylenol is sort of frowned up on in neuro patients, but she definitely needed it. She's very unsettled, very confused and just generally discombobulated (it's a real medical term, I swear) today. She's also very puffy from the blood loss, fluid replacement and from laying on her face for so long during the procedure. We're headed to CT in about 45 minutes to see how things are looking and if all continues to go well, we hope to go home tomorrow. I have a killer headache and am running on about 1 1/5 hours of sleep, a can of Diet Coke and a bowl of cheesy potatoes so hopefully there will be a nap in our not so distant future.

We were blessed by visitors already today. The lovely Julia and her mom happen to be just down the hall. It's always nice to have friends nearby. :) The boys are planning to come up a little bit later. We didn't send E to school today. He had a pretty long day yesterday hanging out in the ER with us and then headed off to Grandma and Grandpa's house for the evening until Kevin could get back to pick him up and take him home. In any case, an early start to Christmas Break was in order for him.

My Dolly is stirring - I'll update later.

All I want....

2010-12-22T19:39:00.000-06:00

....for Christmas is TWO functioning shunts. I hate to say it, but I was right - you know DAYS AGO when I thought there could possibly be a shunt problem. I don't know why I didn't trust my instincts more. M is currently in surgery for a very complicated looking shunt malfunction. It is impossible to tell which shunt or if it's both that are failing. It's also impossible to tell if she has loculations again. There is no solid plan right now. Our beloved neurosurgeon is OUT OF THE COUNTRY! The new nsg seems nice, very confident (but not too confident) and competent. I hate these after hours surgeries because they have to be done on the adult side of the hospital, but luckily our favorite peds anesthesiologist is on tonight. No idea how long we'll be here, but I'll update when I can. Thanks for praying for our precious dolly.

The Very Special Gift

2010-12-20T13:38:00.001-06:00

Today was one of those days I needed a little reminder and I got it when I logged on. I took M for her AFO fitting today and brought home yet another piece of equipment. These very cute, very tiny pieces of plastic will hopefully help prevent my little baby's legs and feet from becoming more deformed. It was an easy appointment and in the whole realm of what we've dealt with, it was really, totally nothing. However, I brought home these little plastic molds and while trying to decide where they would "live" when not on the gloriously cute chubbies that are M's legs, I was reminded again just how much special "stuff" we have. Equipment is truly taking over our house. I'm not complaining, quite the contrary, I'm grateful we have it available to us. It was just one more thing to find a spot for. It was another reminder that likely we will spend the rest of M's life juggling equipment. We currently have a wheelchair, a tumbleform, a bath seat, 4 McKie splints, a Little Room, a nebulizer, a drawer full of central line supplies, and a cupboard full of medications and syringes. In three weeks we'll have her Benik trunk support. A little over a year ago I never would've thought I'd ever own ANY of these things. Heck, I'd never heard of some of these things. So, here we are - thankful to have the best care and the best equipment for our girl, but wondering how much more we can fit in the house.

I digress - I saw this posted on a fellow mom's blog and it's one I've not read before. Of course, as is the case with everything these days, it brought tears to my eyes and reminded me just how LUCKY we are to have our two precious blessings in our lives.

The Very Special Gift
By S. Guevara

Once upon a time, three angels were busily working in the miracle

factory. They were responsible for wrapping up all the little

miracles and sending them on their way. Normally they wrapped each

one in bright, sturdy paper with big, shiny ribbons. They stamped

them with a delivery date and away they would go to the parents who

eagerly awaited their arrival. Things usually ran pretty smoothly.

One day, however, down the conveyor belt came a little miracle that

made the angels pause. "Oh my," said the first angel "this one's

uhm...well...different." "Yes, she is unique" said the second

angel. "Well I think she is quite special," said the first angel "but

I don't think she will quite fit our standard wrapping procedures."

And the second angel added, "And we know she's special, but will

everyone else?" "Not a problem," said the third angel "obviously a

special miracle deserves extra special wrapping; and of course we'll

send her off with our most heartfelt blessings. Then everyone will

see how special she is." "What a wonderful idea!" replied the others.

So they searched the shelves high and low for their finest paper, and

their most delicate ribbons.

When they were done, they stood back and admired their

work. "Beautiful!" they all agreed. "Now for our blessings," said the

third angel "for it is time for her to go." "I will bless her with

innocence and happiness," said the first angel. "And I will bless her

with strength to face the many challenges that lie ahead" said the

second angel. "And I will bless her with an inner beauty that will

shine on all who look upon her" said the third angel. Before sending

her off the third angel, who was very wise, gently tucked a note

inside.

And it said,

"Dear Parents:

Today you have received a very special gift. It may not be what you

were expecting and you may be disappointed, angry and hurt. But

please know that she comes with many blessings. And, while there may

be pain, she will bring you much joy. She will take you on a very

difficult journey but you will meet many wonderful people. She will

teach you patience and understanding and make you reach deep inside

yourselves to find a source of strength and faith you never knew you

had. She will enrich your lives and will touch the hearts of all who

meet her. She may be fragile but she has great inner strength.

So please handle her with care. Give her lots of attention and shower

her with hugs and kisses. Love her with all your heart and she will

blossom before your eyes. Her spirit will shine like the brightest

star for all to see and you will know that you are truly blessed."

Amen

Surgery Update

2010-12-15T21:17:00.000-06:00

For my non-Facebook friends: Surgery went well. Throat was dialated again, one cyst addressed and the central line stayed in. The anesthesiologist was unable to find adequate venous access (not for lack of trying judging by all the holes, tracks and blood streaks) so it was decided to leave the line at least through the winter months. M was a total rockstar this time with the anesthesia and recovery. She's been smiley and silly and just now fell asleep. I just went and grabbed some dinner - a delectable tray of Lunchables (for old time's sake, P) and a muffin the size of my head! The hospital is so full tonight that we are sharing a room - never thought that'd happen. Our roomie is awake and crying a lot so hopefully we'll catch a few winks here and there. She was a July preemie and her mom is very sweet - we have a lot in common. In any case, we should get the boot in the morning and be on our merry way back home. :)

Surgery

2010-12-15T09:58:00.000-06:00

E came down with a terrible cold, too. :( He stayed home yesterday where I pumped him full of Mucinex and fruit/veggie juice. Today, he is much better and is at school. M is still doing okay. She's a bit congested, but her pediatrician said yesterday her lungs were clear. She has had no fevers so at this point, surgery is still on for today. She is scheduled for 2:00 p.m. Hopefully all will go well and this will be the last throat procedure. We're also praying for her central line to be removed. I'm anxious to see what the ENT has to say about her throat. She's been super gaggy the last few days and I'm hoping there's an easy, physical reason for it. If he finds nothing, I'm afraid it's neurologic. I'm a bit more nervous about this procedure since she had such a difficult time with anesthesia last time. I'm hoping we have one of the anesthesiologists who is very familiar with her.

M's disposition has also improved some. So far, she is smiley and squealy today despite not being able to eat anything. I'm sure that will change as the morning turns to afternoon and she can't figure out why her poor tummy is sooooo empty and worse, why mama won't do anything about it. :(

I'll try to update later.

Frustration

2010-12-13T17:57:00.000-06:00

M is sick. It all started last week when I sensed that something was awry. She had no neon sign symptoms, but something seemed a little "off." Smile on my face and optimism in my heart, I took her to the pediatrician expecting a simple UTI or an ear infection. I was greeted in the typical manner with "what tests should we do today?" No, she was not being sassy. I LOVE our pediatrician. She not only respects me as a medical professional, but as a mother who KNOWS when something isn't quite right. She also respects the complexity of M's condition, her very difficult course and my uncanny ability to diagnose her at the first sign of trouble. She examined her completely and we ran labs. Everything checked out perfect. My heart sank a little bit as I decided to take her home to watch her. Not because she was seemingly healthy, but because being "off" and having normal lab work often means a more significant problem, i.e., a failing shunt. The next two days she seemed a bit better, but this weekend something (or someone) possessed her. She is C-R-A-B-B-Y! She is crying....A LOT and it is totally unlike her. She is giddy and squealing with delight one minute and is inconsolable the next. She is not, however having any other signs to make me think it is a shunt issue. Yesterday, I imagined I saw an eye tooth poking through - today, I don't see it. She has never cried about getting teeth - or much of anything else for that matter. She has had a cold for the last few days (of course she does, what with surgery scheduled for Wednesday and all). We dropped her Sabril again last Friday and she continues to be more alert. Could it be that she is merely "waking up" from her overmedicated, disorganized brain, seizurey (yes, it IS too a word) state and is just wanting more out of life? In any case, I am at a loss. I am exhausted and losing my patience. It is hard for me to admit that. It's not her I'm angry at, it's the whole damn situation. I'm angry that there are just too many things to guess about. A baby should not have this many possible serious medical complications to rule out. I'm angry that I can't wave a magic wand and fix it - whatever it is. I'm angry that at 17 months old she cannot roll over, sit up, crawl, run around, play with toys that might amuse her or communicate with me to give me any clue as to what's ailing her. I'm angry that her surgery on Wed could be postponed.....AGAIN! Feeling so frustrated makes me even more angry because I know I'm not being the kind of mom I want to be. I know I need to snap out of it. I know she feels my frustration. I know that it's not the end of the world if surgery is postponed. I just want my happy girl back.

Gluttony

2010-12-06T14:05:00.000-06:00

There is only one thing more heavenly than the Cadbury Creme Egg in April..........................

Chocolate Covered Cherries in December!

Please don't ask me to divulge how many BOXES have passed through our house over the past couple of weeks.

An Open Letter to Professionals

2010-12-01T12:00:00.002-06:00

Below is an incredible letter written by Pia from her blog The Crack and The Light. (Feel free to skip down to it if you're not up for my teary drivel). It brought me to tears - several times actually.

Sometimes, I find it pretty hard to find words that adequately express what I'm thinking or feeling. Sometimes I just type to get it out and then hit "delete" lest I publish it and be judged, God forbid. This is something that deserves to be spread around. This is something every teacher, therapist, doctor, nurse, friend, or family member who has contact with parents of special needs children needs to read and reread again and again. I don't ever expect anyone to understand what we go through or what our kids go through. I don't expect anyone to even care. I do, however, expect people to respect me and respect my feelings because I respect others. I am a mother to two (and someday, hopefully three) children with special needs. Their needs are of varying degrees. Some of their needs are obvious, some are so very hidden. My heart breaks....every....single....day. It breaks not because they make me sad or because I don't love them or because I wish they were "normal." It breaks because they hurt - physically and emotionally; they struggle; they put up with countless doctors, nurses and therapists; they will go through life being labelled, misunderstood, and underappreciated. My heart breaks because I wish others could see the beauty and inspiration in my children that I see.

I think a big part of the reason this letter reached me on such a deep level is because it was written for me - a mom of kids with special needs. It focuses on me and me is something I've kind of forgotten about. Oh, I think about it now and again - I see the lines around my eyes and the grey hair on my head. I feel the aches in my neck and back. I think about it almost daily when someone says "you look frazzled" or " you sure look tired lately." This letter touched me because it made me look inside myself and acknowledge that I do, indeed, feel all of the things she talks about. It reminds me that while I do my best to hold it all together, inside, sometimes, I am falling apart and sometimes, that's okay.

An Open Letter to Professionals

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.
My slightly-broken, definitely-bruised heart.
Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…
You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….
You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…
But regardless of what you see, what you think, or what you believe, this is what you should know:
I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Updates

2010-11-30T20:54:00.002-06:00

It's been a crazy week and it's only Tuesday! Yesterday, M had her casting and she did so awesome! The guy doing it was really surprised how well she cooperated and tolerated it. The whole process only took 1/2 hour. It took three times longer for us to get there! Anyway, her AFOs should be ready in about three weeks. We (okay, I) chose a super-cute flower design for the overlay. We were able to get a tiny bit of Christmas shopping done afterward as well.

Today, I finally dragged myself to the doctor to address my chronic headaches, nausea, and recent dizziness. The doc discovered quite quickly that I have a pretty significant sinus infection. This is the second time I've turned up with a sinus infection with no preceding illness. She also looked back at the CT I had last year during that whole pseudotumor episode and shared with me that my sinus structure is looking pretty crappy and the radiologist remarked that I had "moderate sinus disease". That would've been nice to know LAST YEAR! In any case, if things don't clear with the antibiotics, I will most likely find myself visiting with an ENT.

After my appt, we headed down to radiology for M's repeat renal ultrasound. Her pedi called this evening with the report. Kidneys still look fine, but no one knows what to make of her very full bladder. She is obviously not emptying properly and while it's not a problem now, it could quickly become one. She is putting a call in to the Peds urology team to get their recommendation. We're hoping that if there are procedures to be done, they can be done in conjunction with her surgery on the 15th.

This afternoon, E was able to be seen by neuropsych. She had a cancellation and we snagged it. It was an emotionally draining hour and a half. It was also very informative. I left feeling armed with a knowledge and power I need to try and help him. Basically, on multiple levels, he fits the criteria for an autism diagnosis. However, because he doesn't fit the mold completely, he escapes the label. This is good. His sensory issues are definitely worse. His social skills have regressed. He is easily overwhelmed by his surroundings. His cognitive ability is a both a blessing and a curse. He is learning at such an amazing rate, things are so much more overwhelming to him. She is concerned mostly with his CNS development (or lack there of). It's impossible to know if his lack of development and control is a result of prenatal factors, premature birth, toxin exposure, lack of sensory stimuli, or physical/emotional injury/trauma. He needs therapies. He needs occupational therapy, a speech/language pathologist, social skills training and possibly behavioral therapy. I left the appointment, called the school district and set the wheels in motion for an IEP to be developed. Armed with an extensive report from his neurologist and neuropsychologist, it wasn't a problem to get it going. We have a long way to go, but we're committed to helping our little monkey be the best he possibly can be.

We got our tree up and decorated, the house decorated and it's beginning to look like Christmas around here. We had some flurries today and Rudolph was on TV tonight - does it get any better?

Here's a few pics from the last week:

Check out my crazy girl "jumping" and grooving!

M's "little room" (her resonance board is coming Monday)

All bundled up waiting for the Christmas Parade

Every Christmas, each kiddo chooses an ornament from their country/state of birth box. Here are this year's choices. Louisiana on the left and Kyrgyzstan on the right.

Thanksgiving

My silly Christmas elves!

Shutterfly

2010-11-26T13:27:00.000-06:00

I am so pumped about Shutterfly's Christmas Card Promo! Since hearing about it and checking it out a few days ago, I've been addicted to surfing Shutterfly to try and decide which of their fabulous Photo Christmas Cards we're going to order this year. I have a few favorites, but I can't tell you which - then it wouldn't be a surprise when you find it in your mailbox. I was also stunned to find they have so many other awesome products to choose from. The Photo Calendars are an incredible gift idea. After all, who doesn't need a 2011 calendar? With E's recent calendar obsession, I think I may make one for him with pictures from each corresponding month this year. I know he'd get a huge kick out of seeing himself starring in his very own calendar. The Photo Coffee Mugs are great, too. Perhaps Daddy needs one of these......shhh.....don't tell him! Anyway, I strongly encourage you to go to Shutterfly.com and check everything out. I know I've found a new favorite photo product site!

Neurosurgery Report

2010-11-23T14:44:00.000-06:00

Our appointment yesterday was, as I expected, just wonderful! It's amazing what happens in six months, though. The elder neurosurgeon retired and moved to Kenya with his wife (who was also an NP there). He never performed any of M's procedures, but I do recall (vividly) my first encounter with him last December. We came in and had an emergent procedure done by some ~~super hot~~ highly qualified adult neurosurgeon because our beloved Dr. I was out of the country - I know, how dare he. Anyway, the peds nsg checked in us the next day. He opened with: "I see you adopted her from Louisiana. What'd you do that for? Couldn't you find any healthy, white kids around here to adopt?" Oh, yes he did!! Turns out he has a pretty twisted, and very dry sense of humor. We got talking about how he takes mission trips to Kenya to do hydro surgeries and when he retired he and his wife would move there. I still never got any warm, fuzzy feelings about him, but I digress - he and his wife have left. So, there is a new nsg. Our favorite NP, J, has also left. She was like my best friend during our 10 week stay earlier this year. She did most of M's shunt taps, checked in us almost every day and occasionally just stopped by for a sweet, M snuggle. I really loved her and am going to miss her dearly. So, there are two new NPs. There is also, of course, a new resident whom I met yesterday. I wasn't particularly crazy about the last one - he'd be the one that ignored all of the signs that she was bleeding during her hemorrhage in February until I got there, found Dr. I and told him that she was white and neurologically bizarre. This one appears to have just graduated - from middle school, that is. They come and go pretty fast and so far, no one has measured up to our very first resident - he was great! I am happy to report that the person that was there doing a fellowship for our last two months in the hospital is gone. He was a prick - cocky, rough, sloppy. I couldn't stand the sight of him and from what I gathered yesterday, no one else could either.

Overall, Dr. I was pretty happy with M's status. He's a man of few words, but his expressions tell the story. He gave us another six month pass. Barring any "issues" she'll have an MRI and another visit next May. I completely forgot that he would have no idea about her IS diagnoses since she was diagnosed just after our last visit with him. She started having clusters of spasms just after her post-op hemorrhage in February and ALL THREE neurologists that followed her in the hospital repeatedly blew us off. They thought it was muscular, med-related, or just "healing". Therefore, it took three months to get an IS diagnoses. That's three months of unnecessary damage. At hundreds of spasms a day, that's a lot of damage to add to an already very damaged brain. Anyway, when I told him, he was so sad and so disappointed. He knows that her outcome could've been completely different had it been treated right away.

In spite of everything, I think although developmentally she's not where he was hoping to see her, he was thrilled to see her smiling, squealing, laughing and being silly. We're pretty happy, too!

A Mish Mash

2010-11-21T13:00:00.000-06:00

Nothing really new to discuss, but I have some updates all the way around.

E scored an appointment with his neuropsychologist for Dec 13. We're on the short list if they have a cancellation earlier. The nurse that called me back said the doctor was anticipating this visit - whatever that means. I guess it probably means he's following a typical course and this is around the age kids have difficulties? In any case, I'm grateful we get to see her so soon. Incidentally, the last two days have been pretty good. Other than the typical "boy stuff," he's been fairly happy and peaceful.

Kevin scored a deer this morning, roughly 16 minutes after getting out in the woods! YAY for my mighty hunter putting food in the bellies of his family!

M gets to see her (and my) most favoritest doctor in the entire world tomorrow! We have gone SIX WHOLE MONTHS without a visit to neurosurgery - a record! While it may sound twisted, I'm so excited to go tomorrow. There is a peace and a happiness I feel when we see that doctor - strange since he's cut into my little girl's head 14 times. Truth is, we LOVE him - truly. We've been through hell and back with M's neurosurgical status and he's seen us through it all. He's fought just as hard as she has and never once even considered giving up on her. He has always been there for us - anytime day or night, in person, on the phone. He has never acted like we were a bother. If we ask for him, he is there. I can't wait for him to M and all that she has accomplished in the last six months. Prior to her appointment, she'll have an ECHO to check the status of her distal shunt catheter. I am praying it is still happy and comfy where it sits and we don't have to replace it. Although, I'd be slightly surprised at that considering how much she's grown!

Christmas is coming - in case you didn't realize. I feel like I'm pretty far ahead at the moment. There's a nice big, green tote downstairs full of presents - clearly marked (and booby-trapped, of course) for all to KEEP OUT of. My sweet, lovely babies were wide awake at 4:45 this morning, so rather than fight the sleep monster, we got up, showered, ate and headed off shopping. E is so anxious to get the Christmas decorations up. I've promised him we can do it next Sunday when Daddy gets home from hunting. I've started a baking list, but it's a bit to early to tackle it yet.

I guess that's about it for today. I'll try to report on the big appointment tomorrow afternoon.

Difficult

2010-11-19T10:08:00.000-06:00

In parenting, specifically parenting children that come with uncertain history and, for lack of a better word, "baggage", we all like to try and make it appear that we've got it all together. I know I try - not only to appear that way, but really keep it all together. E has provided us with challenges ever since he giggled his way into our hearts on April 24th, 2007. He had some obvious, albeit minor medical problems. As the months went on, it became clear that he had some not so obvious emotional and neurologic problems. The years have passed and we have worked diligently at responding to his needs and giving him the space, the resources, and encouragement he needs to thrive - even if that means he doesn't follow any sort of predictable (aka "normal") course. He has done well overall, has made tremendous progress and overcome many obstacles.

Early this Spring he underwent extensive neuropsychological evaluations at the recommendation of his neurologist. To back up a bit, his neurologist is certain that he has neuro damage, the extent of which or the etiology of, we are uncertain. It has been her feeling that putting him through an MRI, EEG, etc., wouldn't change our course, so why subject him to it. Anyway, the neuropsych eval revealed that he definitely has Sensory Processing Disorder and most probably ADHD. She gave us recommendations and we have followed them. He's continued to grow leaps and bound in cognitive development, but lately, has begun to regress emotionally/socially. It's difficult when you have to try to explain these types of "hidden" problems to people who don't live it. People are quick to write behavioral issues off to a child being unmanageable, a product of bad parenting, or "just being 4 1/2." With a child like M, you can rattle off the laundry list of medical diagnoses that explain her problems. They are tangible and people accept them even if they don't understand them. E's issues go much deeper, are more complicated, and are very obviously tied to his SPD. Lately he has had very adverse reactions to things that six months ago didn't bother him. He can't stand to have his nails trimmed, his ears cleaned, his teeth brushed. He picks at his food and won't eat anything that has "spots" on it, is a certain color, or is of an undesirable texture. He is having strong reactions to sounds and odors. He is afraid of the dark, afraid of the house falling down, afraid of storms, afraid that everyone's going to leave him. He panics if there is a mark on his skin, a scratch, bruise, paint/marker. No one should have to live with that much fear - especially not an innocent child. Initially, I tried to write it off as a phase or as him just testing his limits. Now I see that, selfishly, I was probably trying to avoid admitting that he very possibly is regressing or having new issues.

Yesterday, I took him for a haircut. For about the last year, he has done great! It's not his favorite activity by any stretch, but he has tolerated it. He sits, gets his hair cut, plays with the water bottle and leaves with a sucker and a smile on his face. Yesterday, he went into a full-blown panic almost immediately after the girl started. He was screaming, swinging, trembling - saying it hurt. It took me back to his first 2 years of haircuts when it was a 4-man job. I guess that was my slap in the face wake up call. I have requested an emergent appointment with his neuropsych (which will, unfortunately, probably land us an appointment in Feb).

It infuriates me to no end that something most likely happened during his first year of life that caused damage to his brain and caused these problems. You hope that you can just love your kids enough to give them eternal happiness, but sometimes, love is not enough. I hate watching him struggle. I hate that he has to work harder than anyone else to get his body to do what he wants it to do. I hate that people don't understand him. I hate that I don't have all the answers. I hate that I can't shelter him or make it all better. I know we have to address these problems. He is a kiddo that is so smart, so funny and so full of spirit. I don't want anything to get in the way of that.

Please keep our little monkey in your prayers.

643,000

2010-11-18T09:43:00.000-06:00

...is how many hunters will be in the woods of Wisconsin this Saturday morning. That's a whole lot of men (and some women, too) with guns!! All the men in my family will be out scouting for the perfect ~~beer~~, I mean deer. Be safe out there, guys!!

Victories

2010-11-17T11:47:00.000-06:00

After last Wednesday's conversation with 'Lil Miss "I'm a 20-year-old, uneducated, bitchy insurance call center rep with a chip on my shoulder" left me totally frustrated and dissatisfied yet again, I decided it was time to pull out the big guns. I sent off a quick email to our Senator's office, whose assitant, Cindy, has always been extremely helpful and supportive. She has provided assistance in the form of a "gentle nudge" to MA twice in the past and both times the cases in question were immediately resolved. Today I got a call from M's pedi's office that she has suddenly been approved for 5 doses of Synagis and will receive her first shot next Wednesday. So, not sure if it was Senator magic again, some other divine intervention, or the fact that everyone was finally sick and tired of hearing from me, but I'm thrilled that we can put this month-long fight to rest.

Yesterday, we also were delighted to receive new photos of K, who is now 3 weeks post-op and looking INCREDIBLE!! For some reason, I feel like this fight is coming close to resolution, as well. I sure hope I'm right about that!

I have had a difficult week and half. I've had a headache, sometimes mild, many times severe for about 10 days now. It's very similar to how I was feeling when I had pseudotumor last August. With our new (and much crappier) insurance, I hesitate to run off to the doctor. I'm praying it resolves soon.

A Quick Update on M

2010-11-12T12:36:00.000-06:00

M had back-to-back appointments yesterday - pretty big ones! She had a renal ultrasound which, unfortunately, showed that she's having significant urinary stasis. This means that her bladder is not emptying properly. As is common with kiddos like her who have ~~little~~ no muscle tone, things like bladder and bowel function are often affected. We've got her to a point where she poops once or twice a week (if you're not interested in this part, feel free to skip ahead) and it is nice and soft. However, that means that on the days when she's not pooping, there is likely extra pressure on her bladder and urethra. Potential complications of stasis are frequent infections and kidney damage, just to name two. First thing we have to do is get her pooping daily - easier said than done, but we're going to give it a try. She'll probably have a VCUG when she is hospitalized for her next throat surgery in December.

At her neuromuscular rehab appt, it was decided that it's time to cast her for bilateral AFOs. Her achilles' are extremely tight and her little feet are starting to change form (not in a good way). Since she is a long way off from crawling or walking, her AFOs are going to be solid and fixed, their use primarily to give a nice stretch to her legs/ankles/feet and hopefully prevent further tightening. We had a brief discussion about Botox, but we're a ways off from considering that as a potential treatment. Her overall tone, the Doc felt, was a little worse - when I call her my noodle, I'm really not kidding! Good news is her left arm and hand appear to be stable with the Mckie splint she has. Her head throwing, head/chest hitting, face scratching seem to be sensory. M LOVES to be in motion. She loves to swing and be ~~thrown~~ gently tossed in the air. She needs vestibular input and we're searching for ways to provide it for her. She can't be in her Jumperoo because she bangs her head and face. She's too heavy for her infant swing. She doesn't sit, roll or crawl. Her vision impairment prevents her from getting visual sensory input. We'll be trying out some equipment when we go to the Rehab clinic for casting and see if we can't find her something to satisfy her need for motion. We're adding one new medication to her regime to see if we can get her a little stronger and improve her endurance a bit. Overall, a very good, very informative appointment.

Lastly, it was EEG time - the most dreaded of all appointments. M cannot stand to have her head touched. She barely tolerates having her hair combed. Attaching all the EEG leads and then subsequently taking them all off is a big ordeal for her (and the poor tech that gets stuck with us). Luckily, she's so worn out after getting them on, she goes right to sleep for the actual test. While we don't have the "official" read on the tracing yet, the techs there are never shy about letting me take a look and comparing to previous tracings. This one looked better than any she's ever had. She had very little disorganization and the tracings were almost....get this....symmetrical! This is HUGE! I have to say that it correlates nicely with her clinically. She's had very few seizures since starting the Tri-Leptal last month. We haven't seen a spasm (knock wood) in several months. She's been more alert, happier, more interactive and sleeping better, too.

I also drew labs on her last week and all is looking perfect!

We're still fighting the insurance to get her Synagis for the season. It's an uphill battle, but little do they know who they're dealing with. Sometimes I get the feeling they try to ignore you long enough in hopes you'll go away. Not happening!!

I got word today that the anterior trunk support vest that was not ordered with her wheelchair is FINALLY in (after FIVE WEEKS). We also lost a couple of very important parts of the chair and those are on order. Next Thursday I'll make the trek to the medical supply place for a re-fitting, "installation" of the vest, and hopefully repair.

I guess this wasn't a very "quick" update after all. That's what's going on with our girl right now.

Surgery 6000 miles away

2010-11-03T12:06:00.001-05:00

Finally....after two years of trying..."baby" K had her first cleft surgery by the German craniofacial team that travels to Bishkek. We are so incredibly grateful to all of the people involved in making this happen. I am absolutely blown away by the results. She is exactly one week post-op and the surgery looks to be a huge success. She was beautiful before, and she's beautiful now! There's lots of healing to take place so as long as there are no complications, the repair will continue to look better and better. I only wish she could be recovering at home with her family.

August 12, 2010

November 2, 2010

Happy Adoption Day, Dolly!

2010-11-02T20:25:00.000-05:00

One year ago today, our amazing, little miracle baby officially became part of our family. Little did I know then how much she would change our lives. This last year has definitely been a roller coaster - a little scary at times and a whole lot of fun!
We are celebrating tonight with a cake that big brother desperately wanted to make for his little sis and Thursday we'll all take the afternoon off, go out to lunch, take a very exciting trip to Department of Homeland Security for our one billionth set of USCIS fingerprints (okay, that MIGHT be a LITTLE dramatic), and then back to school for E's 4K Halloween Party that was cancelled last week due to a power outage.

Here are M's stats from her 15 month well-child appointment yesterday:

head circumference - 42.2 cm (below 3%)
length - 28.6 inches (7%)
weight - 21 lbs 8 oz (30%) - quite a feat considering she started life out at 1 lb 7 oz!!

This little lady has taught us so much over the last 12 months! We love you, Dolly, and we are grateful for you!!

November 2, 2009

November 2, 2010

Halloween weekend

2010-11-01T09:50:00.000-05:00

Cookie making

REAL men wear Crayon hats!

Is there anything more fun than playing in the leaves?

E started basketball last week. This is the "seriously, Mom, take the picture, you're embarrassing me" pose.

Building a caterpillar treehouse.

My silly, blue crayon.

My very happy, purple butterfly.

Ready to go Trick-or-Treating!

Walking around collecting candy is HARD work!

Pumpkins!

2010-10-25T09:01:00.000-05:00

Have I mentioned how much I LOVE Fall?!?!

Two more sweeties coming home!

2010-10-22T11:54:00.000-05:00

My great friend, Michelle, and her super-husband, Keith, are leaving tomorrow to bring home their beautiful new daughters from Ghana. Please pray that they have a safe, uneventful journey - it's been a long time coming for them.

Pneumonia AND a UTI

2010-10-20T07:26:00.000-05:00

Yup - it must be October!

Another fight, a milestone and fall fun

2010-10-14T14:11:00.000-05:00

I'm on a mission to have Synagis covered for M this season. She got it last season because she was a 25wk preemie under 12mos old. Now she is almost 15mos and while still gestationally under 12mos, MA says she doesn't qualify. Some of the conditions that DO qualify are cardiac problems, lung disease, congenital airway conditions, neuromuscular conditions, etc. Hmmm.....subglottic stenosis, subglottic cysts, strider, cerebral palsy, hydrocephalus, epilepsy, infantile spasms, and extreme prematurity - I would think one (or more) of those things would fall into a category. I, however, seem to be more logical than insurance companies. So, yet another battle ensues. At $1500 PER SHOT (it's given monthly for six months), we just don't have any way to pay out-of-pocket for it. I feel like such a failure that I can't give my fragile daughter this simple protection.

In happy news - M hit a milestone, sort of! Yesterday, she was napping in the living room. I heard fussing so I came in and this is is what I saw. Okay, not exactly this. Despite her distress, I ran to get the camera, rolled her back over and waited a second to see if she'd do it again. I know, mean mommy! This is her first official solo roll!!

We've been having a great fall. The weather has been incredible and we've made it to Pumpkin Farms and have been able to play outside a lot. We're headed up North this weekend for a party with friends. Here's a few photos of our recent fun and of some of M's new gear.

Two weekends ago at one of the many Pumpkin Patches we've visited - it was COLD!

The Otter - M is LOVING it! She can finally enjoy a relaxing, SAFE bath!

Last weekend's "Boys' Camp Night"

M's new rig - it is so great!

Another Pumpkin Patch - warm this time!

Is this not just a really cool picture?

"Secretly Disabled"

2010-10-12T10:28:00.000-05:00

I've had a post sitting in my "to be posted" list for quite some time now. I keep going back to it, re-reading it, editing it yet again. Somehow, I can't get it just right. No matter what I write or how I write it, I can't find the words to express what I'm trying to say without sounding whiny or complainy. Just yesterday, a fellow blogger, Matthew's Mommy, posted on the same subject. She referenced another blog post that you can (and should) read HERE.

Basically, these moms have hit the nail on the head. We have been parenting a "secretly disabled" child for just under a year now. She is cute, cuddly, beautiful, sweet and, not so obviously, disabled. You cannot see the dozen scars on her head or the two shunt bumps and tubing. Her central line is hidden by her shirt as are all of the scars on her chest and abdomen. You can't see the scars on her neck because of her super-cute, chubby chins. You can't tell that her left arm and hand don't work. You can't tell she has Cerebral Palsy. You can't tell that she has Epilepsy and significant neurlogic damage. Her nystagmus causes her eyes to be in constant motion which outsiders take as her "looking around at everything." ~~Anytime~~ EVERY time we take her out anywhere, there are comments, whispers and curious glances. "Oh, she's so sleepy." "Isn't she walking yet?" "What's wrong with her eyes?" "I can't seem to get her attention." "Maam, we don't allow strollers in here." I could go on and on. Although ignorant and hurtful comments do drive me nuts, I'm more bothered by the people who stare or whisper and don't have the guts to ask a question. Now that we've got M's wheelchair, it is slightly more obvious to people that she may have other issues, although many people think it's just a really fancy stroller. In a way, it has helped "out" us. While I don't give a hoot what other people think, it's exhausting to constantly have to justify and explain things. M cannot sit in a high chair, a booster seat or a shopping cart. She's too heavy for infant seats. Basically, without her wheelchair, we cannot take her to a restaurant or a store unless we hold her the entire time - not fun for her or us.

My desire to write this post was driven by my sheer need to just get it off my chest. However, hopefully there's a little bit of education here, also. Hopefully when you're out and about you'll remember that people are so very diverse. Everyone is dealing with something. Don't make assumptions and if you have a legitimate question - ask it!

Vision Evaluation

2010-10-05T14:13:00.001-05:00

Today M & I had the pleasure of meeting with two individuals from WCBVI. I learned so much in a very short amount of time. Hopefully they'll get their report and notes out to me soon because certainly there are things I have forgotten already!

What we discovered is that M does indeed have one, tiny area of functional vision. It is, as we suspected, in the lower, right periphery. She actually appears to visually engage in that field up to four feet away. She has zero functional vision closer than about 4 inches, zero to the left, zero upward, and zero midline. She "shuts off" her vision any time she is presented with a challenge and anytime she is startled or uncomfortable. They also noted she appears to possibly have some cortical-auditory impairment and are working on a referral for that evaluation. Basically what all of that means is that her eyes and ears are perfectly normal, but the pathways used in her brain to process information are not working properly. The good news is that with training, these types of impairment CAN improve. She will likely never have 100% functional vision. She will always have an impairment. However, with a lot of hard work, she COULD get to a point where visual input could be a part of her life.

The most valuable thing I took away from our meeting is a sense of what living life without vision is like. I learned how M should be handled, approached, talked to, touched, introduced to people/things. I learned that she deserves and requires a lot of respect in terms of her personal space and her desire to do (or not do) things. I was reminded that it's okay for me to remind people that they should ask permission before approaching my child. I learned about some of the things we're doing right and a lot of the things we could be doing better for her. Truth is, there is a lot we need to learn and some changes we need to make. We definitely need to slow down A LOT! I learned about hand under hand assistance, dandy hands, calendar systems, and passive transport. I learned about synapses and senses. There are so many things we can do in the present to help improve her future.

I will make it a point to try and share some of the techniques we try and the outcomes for those of you with CVI kiddos. I welcome input and suggestions as well!

20!

2010-10-04T15:04:00.000-05:00

Check out my ticker waaaaay at the bottom of the page. I've been waiting for sooooo long to hit that milestone!

Another Great Article

2010-10-01T07:57:00.001-05:00

Thank you, Laurie!!

Kyrgyzstan: American Adoptions Still Stalled

September 30, 2010 - 1:55pm, by Laurie Rich

There’s a tiny grave near an orphanage on the outskirts of Bishkek. It holds the body of an undersized 2-year-old girl who died in August from complications of a disease that is dangerous, yet often manageable in the United States. The little girl, who had been matched for adoption with a Florida doctor, is a casualty of a moratorium on international adoptions imposed long before Kyrgyzstan became engulfed in turmoil this spring.

The dead girl’s adoption, along with those of 64 other Kyrgyz orphans by American families, had been stalled for roughly two years. After protracted talks, officials on both sides are optimistic that the adoption logjam will finally be broken -- but they all concede that the issue will ultimately need to be resolved by the Kyrgyz legislators who are elected in the nation’s October 10 parliamentary elections.

“The parliament will be back and (proponents of completing these adoptions) have quite a serious lobby there,” Kyrgyzstan’s provisional president, Roza Otunbayeva, told EurasiaNet.org on September 23. Otunbayeva was in New York for the 65th United Nations General Assembly.
Kyrgyz officials are currently reviewing a memorandum of understanding (MOU) prepared by the US State Department that, if signed by both governments, would expedite the adoptions of the 64 orphans. Ambassador Susan Jacobs, The State Department’s Special Advisor for International Children’s Issues, presented the MOU in mid-September to different Kyrgyz ministries during a special trip to Bishkek.

Jacobs said that once both governments agree on the document’s language, the MOU can be submitted to the new sitting parliament in Kyrgyzstan for approval.
"We're hoping that we can get this done before the end of the year," Jacobs said. She acknowledged that the disabilities and developmental delays of many of the children added an element of urgency to the process. “While these children were offered for domestic adoption, they were not adopted. So they were institutionalized. These are tough cases; these children need to be in a loving home."

Time means the most to the prospective adoptees in need of medical help and therapy. The younger they are, the more effective surgeries and therapy can be. Carrie and Bob Delille of Virginia are trying to bring home one of the oldest children in the group of 64, an 11-year-old boy with a cleft palate and possibly a bone condition. The palate issue means the boy basically has no roof to his mouth, makes eating difficult.

“If this [adoption] process had gone the way it was supposed to, he would have come home a year earlier,” Bob Delille said. “Instead, here he languishes in an orphanage undernourished, with no surgery, and with rickets.”

According to local news media, the MOU has Kyrgyz support. Feruza Dzhamasheva, chairwoman of the Supreme Court, met with Jacobs on her visit and “expressed readiness to co-operate in achieving an aim, because Kyrgyzstan is also interested in helping those children to join their families,” Kyrgyz news outlet 24.kg reported.

Drafting the MOU was a Kyrgyz recommendation. A delegation visiting the United States in late August suggested that the United States create an agreement as a way to restart talks on the issue that had languished. The Kyrgyz officials requested two specific provisions be included: that the children retain their birth citizenship after adoption and live as dual US and Kyrgyz citizens; and that the government receive a yearly report on each child until his or her 18th birthday.

Keeping tabs on local children adopted by foreigners is a sensitive issue in the former Soviet Union. Reports of Russian orphans who’ve died since being adopted internationally have stoked fear about the process in the region, as did the incident last April when a Tennessee woman relinquished her adopted 7-year-old son by placing him alone on a plane back to Moscow.

The Kyrgyz government is currently rewriting its laws on international adoption to address these concerns and to try to reduce corruption in the system. The MOU would only resolve the 64 pending cases. A moratorium would remain in place on new foreign adoptions from Kyrgyzstan until new legislation is enacted.

After two years of starts and stops, dozens of unfulfilled promises from governments and adoption agencies, and political upheaval in Bishkek that nearly unraveled all their efforts, some of the 64 families are guarded when discussing the MOU.

“We have to manage our emotions,” said New York resident Frances Pardus-Abbadessa, who, along with her husband, Drew Pardus, is hoping to adopt a 3-year-old boy. “As much as we want to get excited, there are still too many potential barriers that could cause this wonderful timeline to go astray.”

As time ticks on, the story of the two-year-old girl’s sad fate sits in the back of many waiting parents’ minds. The girl’s adoptive mother, a Florida pediatrician named Suzanne Bilyeu, was the first to diagnose the child’s advanced hydrocephalus from photos she received in March of 2009, seven months after she was originally scheduled to bring the girl home. This led to two in-country surgeries, the second of which was this summer. The girl died a few weeks after that last procedure, on August 9.

“She’s what we’ve all been so afraid of, what we all thought could happen,” Bilyeau said, discussing the fears of the families as they wait thousands of miles away from the children they hope to bring into their own families. “She undoubtedly is in a beautiful place. It just seemed like such a preventable loss.”

Editor's note: Laurie Rich Salerno is an editor for Patch.com. She lives in Meriden, CT.

Baby Steps

2010-09-29T13:09:00.001-05:00

M had her follow up EEG this morning. I LOVE our Neuro in that she always reads it and sees us immediately following to discuss what's next. Today, she walked into the room with a nice smile on her face. M's EEG has improved. The activity on the left side of her brain looks....almost.....wait.....get this.....NORMAL! I'm not sure we've ever heard that word out of any Dr.'s mouth with regard to M in any respect. The right side is still showing lots of disorganization and spikes (more on that in a minute), but not necessarily hypsarrhythmia. This is really excellent news. She started to discuss weaning her off the Sabril (her IS med), but I cut her off. She's only been on it three months and her response has been really good. That medication brought her back to us and I'm not quite ready to take the chance of going backwards. We'll continue it for three months and if she continues to do well, begin to wean.

So, the right side. That's another story altogether. The right side is where the bulk of her damage is. Despite her two Grade IV bleeds being on the left and the one Grade III bleed occurring on the right, it is where she has had the most shunt trouble, thus the most surgical intervention. Back in February, in one final attempt to control the fluid in her right temporal horn and right ventricles, our neurosurgeon filleted the entire ventricular matrix. Sounds lovely, right? In any case, it is also the location of most of her PVL. The disorganization is to be expected, as is the left-sided hemiparesis that she has. The spikes are new and are an indication of a new type of seizure. We were told when she was diagnosed with IS that she was at very high risk of developing other types of seizures or even Lennox-Gastaut Syndrome down the road. We've tucked that info away in the back of our brains to worry about another day. Over the past few weeks we've noted some atypical behavior and questioned if it was seizure activity. Today, M's neuro diagnosed her with Complex Focal Seizures. It is very possible this new type of epilepsy is replacing her IS. She is starting a new medication and hopefully she'll respond well to it and we'll get good control quickly. We're also adding an Omega-3 supplement.

Overall it was a good news/bad news type of day, but I walked away feeling very positive. Small victories and baby steps are what we thrive on.

T minus 2 days.....

2010-09-28T14:16:00.003-05:00

Let me preface by saying that I LOVE FALL. It is definitely my favorite time of year. I love the cooler weather, the trees changing color, fall festivals, carmel apples, pumpkins, I could go on and on.

On the other hand, I fear it. October is the official beginning of the dreaded Flu/RSV season. M remains extremely susceptible and vulnerable to bacterial and viral infections. She could easily pick something up that could land her in the hospital....or worse. E is in school 4 mornings per week and he is likely to be the primary culprit of sneaking evil germs into the household. Kevin works full time around a lot of people and I work in part time in health care. We're all potential carriers for invaders.

I feel good about the plan I have in place to face the next six months and am going to try so hard to not obsess, but I also have to do what is best for us. There will probably be limited trips out to stores, restaurants, etc. We most likely will not attend every function to which we are invited. This is not because we are antisocial or don't like you - we just need to stay safe. We may remind you to wash your hands or ask that you not visit if you or someone in your family is/has been ill. Please don't be offended and please don't tell me that "kids need germs."

Hopefully we can keep the illnesses mild and to a minimum. Going into fall/winter, it helps that we already have great habits. Upon entering the house, shoes come off at the door and hands are immediately washed. Even E does a great job of this without being reminded (most of the time). I'm not a fan of chemicals and generally use all natural cleaners, but for the next six months we are well armed with Clorox and Purell.

WISHING YOU ALL A VERY SAFE, HEALTHY, HAPPY FALL!

Line Stays

2010-09-22T20:19:00.000-05:00

Surgery went well. M did okay, despite needing enough anesthesia to "knock out two large adults" (direct quote from her anesthesiologist). She always requires a little.....extra juice, but today it was pretty extreme. Her ENT discovered two new subglottic cysts which he treated and also used the balloon to dilate her subglottic stenosis. Because things weren't as beautiful and perfect as he wanted them to be, she'll have to head back to the OR in a couple of months to check it all out again. Because the anesthesiologist couldn't find a suitable spot for venous access, the line stayed in. I'm bummed, but it's really okay. Whatever's best for my Dolly! M had an extremely rough time coming out of the anesthesia, probably due to the amount and combination of drugs she received. She also developed some very disturbing swelling around her distal shunt. Her neurosurgeon was paged and it was his feeling that the fluid accumulation was due to a little fluid overload since she received so much in the OR. Hopefully it will have gone down by morning. Currently, M is resting fairly comfortably and I'm settling in for a little rubber couch nap. :)

Surgery and pictures

2010-09-22T13:28:00.000-05:00

"Goodbye" central line - we will miss you...NOT!

Surgery number 17 (I think) is underway. I'm so grateful M was healthy enough to go in today. I did not want to postpone yet again. When her surgeon popped in to chat, he mentioned that IF he goes in and finds that everything looks perfect and beautiful, she will likely be able to head right home this evening. THAT would be incredible! Her central line is also scheduled to be removed while she's in the OR. She's had it for over 9 months and other than one surgery and one blood draw, it's not been used since April. We flush it every night and change the dressing every three days, and it's not THAT big of a deal; but, it's one more potential source of infection and one more thing to keep track of. I'm nervous, yet happy to see it go.

Here's a few pictures from the past several weeks just for fun.

Finger coils

Who do you think won this race??

Always the best big brother!

Full tummy - time for some snuggles

Hmmm...how come he always thinks of alternative uses for toys? Looks pretty safe, doesn't it?

Tooting my own horn

2010-09-20T18:48:00.003-05:00

I was reminded by my doctor the other day (during the dreaded annual physical) that it's been just over ONE YEAR since I quit smoking! YAY ME! She also confidently reminded me that the extra...oh...fifty-ish pounds I'm carrying around is still far healthier than smoking. Hopefully next year I can report major success in the fatso category, too.

In other breaking news - I picked up E from school today expecting the usual stern teacher conference and was pleasantly surprised to receive a very good report. She said he was her best student of the day (out of 16 kids)! YAY E! I am so proud of him today and even better was how incredibly proud of himself he was. He was just absolutely beaming.

BUSY

2010-09-19T13:26:00.002-05:00

Normally, I hate that word - no, I despise it. I TRY really hard not to use it. Nothing bothers me more than hearing "I'm so busy, I can't..." or "I was too busy to..." or "I've been so busy I haven't been able to..." Everyone's busy, no one has enough time for anything, "busy" is just an excuse for not doing something you should've, would've, or could've done but chose not to. So, I'll just say - I'm not real sure what happened to my week. I'm sorry I've not posted. This past week was our first week of my "new" (and improved) schedule. I worked a grand total of 13, yup count 'em 13 hours! Still, it seemed I was running around like a mad woman. Two trips each morning to and from school which is 15 miles away, takes a chunk out of the morning. M didn't have any doctor appointments this week, just four therapy visits. Taking care of my kids is.........hard work! They are silly and needy and so much fun!! There are a lot of little projects around here I want to get done and of course, I feel like I have to get them ALL done RIGHT NOW. Kevin keeps reminding me that everything doesn't have to happen the first day. He's right - shhhh, don't tell him that. ;) I think in time, I'll learn to adapt to this new way of life and we'll get into a groove of sorts. I've signed myself up for a YOGA class and E up for Basketball and Swimming Lessons. I plan to get M into the pool a couple of times a week to use her Waterway Babies ring.

A good portion of my free time this week was spent on the phone fighting the system once again. Back in July, we submitted prior authorizations for M's adaptive bath seat and wheelchair. The first week of August, our primary insurance approved it all at their contracted 75%. That left 25% for her Medical Assistance to cover. They have reviewed and sent back the PA's FIVE TIMES. Each time it's something completely stupid and arbitrary. Because M loses her primary coverage Sept 30th (don't get me started on that one), time is of the essence in getting this stuff ordered. Finally, fed up with they way the system "works" (or doesn't), I contacted our Senator. Long story short, a community advocate was contacted and she initiated a string of communications with the folks at MA. On Thursday she submitted a formal request to review and expedite the PA's AS SUBMITTED per Sen. Fitzerald's request. On Friday morning I received a call from our vendor stating she had all of the APPROVED PA's in her hands. So, we'll be getting M's equipment - hopefully by our Sept 30th deadline.

Currently, M has a cold. It was really bad on Friday, but seems to be getting a little better. She is schedule for surgery on Wednesday and I have my doubts that they are going to allow it to happen unless she makes a truly miraculous recovery! It has been postponed THREE times already. I guess, on the bright side, it's good to have a postponable surgery. That means that whatever needs to be done is definitely not an emergency - we like that!

E has earned a set of horns from school. I'm not sure what happened, but it's as though a switch was flipped and he became this ignoring, potty-mouthed, sassy, tongue-sticking-outing, drama queen. I know it's partially just being 4, partially the loss of his long-term teacher and the introduction of a sub, and partially the other sassy boys in his class. I don't know when it will end. I don't know if I will make it through this stage with my sanity intact. All I know is that we sound like broken records and he's getting permanent flat butt from hanging out so much in his time-out chair. Hopefully he'll remember soon that disrespect is absolutely forbidden in our family.

In very sad news, the govt. of Kyrgyzstan has allowed another precious child to die in orphanage care. This beautiful girl was matched back in 2008 with a wonderful American family. She developed hydrocephalus, which went untreated initially. She suffered irreversible damage before receiving medical intervention. Sadly, she lost her battle. As a mother to a child with very complicated hydrocephalus, this infuriates me even more. This little girl did not have to die. She did not have to suffer for two years. She SHOULD'VE been home with her family where she WOULD'VE received high-quality care RIGHT AWAY. She SHOULD and WOULD be toddling around her home right now if it weren't for politics and bureaucracy. Hopefully this angel has found peace. Hopefully there will not be more casualties as the delays drag on. Prayerfully, those who are working so hard for the orphaned children and waiting families will be able to make an impact with the powers that be and convince them to free these kids.

2010-09-19T09:00:00.000-05:00

Heaven’s Special Child

A meeting was held quite far from Earth,

It was time again for another birth.

Said the Angels to the Lord above -

“This special child will need much love.

Her progress may be very slow,

Accomplishments she may not show.

And she’ll require extra care

From the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away.

So many times she will be labeled

‘different’, ‘helpless’ and disabled.

So, let’s be careful where she’s sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith, and richer love.

And soon they’ll know the privilege given

In caring for their gift from heaven.

Their precious charge, so meek and mild,

Is heaven’s very special child.”

–compliments of ‘Dear Abby’, 12/03/09

Catching Up

2010-09-06T13:17:00.010-05:00

Sorry I've been MIA for a week. We really didn't have anything out of the ordinary going on, but it seemed to be busier than normal.

E started 4K this week. I don't know how he grew up this fast. If anyone knows how I can slow it down, though, please share! The first day was a bit.......hectic and......challenging. Okay, so I picked him up and his teacher says to me "I was not impressed with E***'s behavior today." Not exactly what I was hoping to hear, but I did expect a few issues at first. With his Sensory Processing Disorder comes behavior problems. They are not new to anyone, including his teacher, but they are definitely amplified by big changes in his environment and schedule. Add to that there were several new boys who had never been outside their homes before and had no clue how to behave in a school environment and you have a 4 year old BOY with SPD bouncing off the walls trying to imitate his new friends. There was a car meeting, dinner meeting, bedtime meeting, breakfast meeting, second car meeting and a brief morning meeting at school and I'm happy to report the second day was fantastic! Hopefully the trend will continue. We're grateful that he and his teacher have been together for the last 4 months so that is one constant in his school life.

The "Happy Backpack Dance" the night before

0615 darkness the first day of school - I had to be to work super early that day! :(

Ready to get on with the first day! sniff...sniff...how did he grow up so fast??

M is doing well. She had another cold - I know, hard to believe, right? She has been so incredibly interactive and happy this week. She's getting new teeth and they're coming sooooo fast! She has also suddenly found muscles and coordination she never knew she had. When on her tummy, she'll pull her head and shoulders off the ground. She can hold her head and trunk upright with assistance and she is starting to use her left leg more. Throat surgery is rescheduled for September 22. If all goes well, we'll spend just one night in the PICU and hopefully this is her last throat procedure.

Noodles - poised and ready.....

Righty never fails.....let's see if we can get a message to lefty to join in the fun....
Look at that - TWO STRAIGHT (chubalicious) LEGS!!!! Is that phenomenal coordination, or what? Joyous pride at my huge accomplishment!
Four, almost FIVE teeth already

Lounging, "watching" a little TV

Sleepy time

The weather has been Heavenly (by my standards). I LOVE Fall, I LOVE cooler weather, I LOVE when the air conditioners come out and the windows can stay open. E LOVES puddles!
In less happy news, the Government of Kyrgyzstan continues to hold innocent, sick children hostage. Despite making promise after promise, these children are still suffering. They are still lacking nutrition, love, socialization and medical care. There are families waiting to welcome them into their families and yet the powers that be continue to deny these children their basic rights. I don't know how these people sleep at night or look at themselves in the mirror in the morning. Perhaps they should look at this sweet face instead. Please keep all of these orphans and their waiting families in your prayers.

"Baby" K - we love you, sweetie!

2010-09-04T09:06:00.003-05:00

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never go away...

because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A Tiny (Trivial) Tantrum

2010-08-25T06:15:00.001-05:00

Let me preface by saying I'm trying really hard not to be a whiner. I'm trying to be grateful that we're not sitting in a hospital room. I'm trying not to be bitter about the cesspool that is daycare. Seriously, though - give my girl a break! M now has pink eye. Yup, pneumonia to back-to-back upper respiratory infections, to pink eye. Don't get me wrong all of these things are way better than shunt failures, hemorrhages, and blood infections so I'm not complaining....really. I just want her to have a week or so of health! Is that too much to ask? Tantrum over.

Final....FINALLY!

2010-08-23T11:29:00.003-05:00

It's been a looooong time coming, but M's adoption is finally final! There was a lot involved with coordinating finalization via video conference. Mostly that the State of Louisiana doesn't allow finalizations to occur anywhere but in the courtroom of the sending agency's Parish. Thanks to our SW and Attorney well-written appeal, the judge granted an exception to our case. So, this morning, Via Skype, our case was heard, the decree was signed and M was declared an official Fenske!

And she's rolling.....

2010-08-20T06:00:00.002-05:00

....almost! Yesterday, M got a little crazy and started doing a sort of "half-roll." Usually, you could place her in any position, no matter how bizarre, and she'd just lie there. She does not typically have the strength or coordination to get herself into or out of any position. Well, yesterday, when placed on her side, almost to her stomach, she would consistently roll herself to her back. Her therapist was absolutely thrilled and of course, she did it for Daddy several times last night. This is a HUGE accomplishment for her!

In other news, her new wheels have been approved to 80% by our primary insurance. Now we just have to wait for her MA to process the remaining, then we can get an order placed. This is the chair we've decided to go with, although not in this color. It will be a relief to finally have a chair to put her in where she doesn't flop forward, backward and side-to-side. She can be....get this....comfortable AND safe! Unfortunately, our request for an adaptive bath seat has been denied as a "convenience item." Apparently, trying to bathe a wet, soaped-up, slippery 20lb child with no tone who's unable to control her movements is merely an inconvenience. If you ask me (who happens to bathe her), it is down right dangerous. Then again, I don't have the vast educational knowledge on these things like an insurance underwriter does. Bitter? Me? No way! I digress. We still have a slim chance that MA will approve it. If they don't we'll have yet another (very large) out-of-pocket expense. Gotta love insurance companies!

C-L-U-T-Z

2010-08-15T06:00:00.001-05:00

This is what happens when you carry two children, a bag, and a bunch of papers while simultaneously trying to remote open the van doors in a parking lot full of holes:

Not broken - THANK GOODNESS! Just a really bad sprain.

Prayers Needed

2010-08-14T06:00:00.000-05:00

There is another beautiful, sweet Marissa out there who needs some prayers. This amazing little girl (and her amazing family) is preparing to embark upon a very difficult new leg of their journey with IS/Epilepsy. Please take some time this weekend to pray for them and the doctors that will be caring for her.

CLICK HERE TO READ HER STORY

Sweet Smiles

2010-08-08T13:55:00.004-05:00

You just have no idea how grateful we are to see these! A very short time ago, M was so trapped inside herself. Seizure control has really brought out her happiness. In other news - the last picture is my first shot at an actual hairdo. She still doesn't have much to work with, but it turned it out way cuter than I thought it was going to.

Where did it go?

2010-08-07T06:00:00.001-05:00

It is AUGUST! How did that happen? I have no idea where this summer (or this year, for that matter) has gone. In two short months, it will be time for us to lock ourselves down in our house and pray for a winter of good health. Yup - I know some of you are shaking your heads already; thinking "she's insane - kids NEED germs to build up their immune systems." You probably don't have a medically fragile child. You probably don't need to worry that that "little cold or 24 hour stomach bug" could be fatal to your child. Flu and RSV season is rapidly approaching and I won't lie, it frightens me. We spent 3 months in the hospital last winter (and we know what a germ factory hospitals are). Yet, M managed to not even get a single cold all season. She got her first cold in April one week after starting daycare. She was sick again in May - thanks to daycare and she had pneumonia in July.....again....daycare. Currently she has more upper respiratory crap. Luckily, none of these infections have landed her in the hospital. Winter is a frightening time for parents with medically fragile children. Please, as the season looms near, remember those with children who may not be as strong as yours. Respect them and respect their wishes. WASH YOUR HANDS and don't roll your eyes if they come at you with a bottle of hand sanitizer. Please keep your children home when they are ill. Please, if you are ill or have been ill, or have been around someone who has been ill, postpone visits to loved ones who are at high risk. I'm hoping we survive the winter with few illnesses and, dare I say, zero trips to the hospital.

In other news, I'm happy (and scared to death) to report that next month I will be changing from full-time to fill-in status at work. This means that I will likely only work 8-16 hours per week. The kids will be at home either with a family member (hopefully) or a sitter when I'm at work. NO MORE DAYCARE!!!! I have NEVER not worked full-time. I'm frightened to give up all the benefits that my job offers. I'm frightened that I won't be a great SAHM. I'm frightened that Kevin is going to feel overwhelmed with the burden of being the primary breadwinner. Financially, it is going to be beyond tight. Yet, the thought of being with my kids, who are growing up waaay too fast, and being able to go to every appointment or every field trip and have time to enjoy them is so incredibly exciting to me. The thought of being able to be there for M, to work with her more, to give her every opportunity she deserves is such a gift. E will be at 4K from 8-11:15 Mon-Thurs. That gives M and I a nice amount of time for daily therapy. I'm so looking forward to spending un-rushed time with both of my children. I saw this posted on another blog and it really describes how I feel (sorry, Honey, I know you hate poems).

I Took His Hand and Followed

Mrs. Roy L. Peifer

My dishes went unwashed today,
I didn't make the bed,
I took his hand and followed
Where his eager footsteps led.
Oh yes, we went adventuring,
My little son and I...
Exploring all the great outdoors
Beneath the summer sky
We waded in a crystal stream,
We wandered through a wood...
My kitchen wasn't swept today
But life was gay and good.
We found a cool, sun-dappled glade
And now my small son knows
How Mother Bunny hides her nest,
Where jack-in-the-pulpit grows.
We watched a robin feed her young,
We climbed a sunlit hill...
Saw cloud-sheep scamper through the sky,
We plucked a daffodil.
That my house was neglected,
That I didn't brush the stairs,
In twenty years, no one on earth
Will know, or even care.
But that I've helped my little boy
To noble manhood grow,
In twenty years, the whole wide world
May look and see and know.

2010-08-01T15:07:00.002-05:00

Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is.

They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule.

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.

From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Answered Prayers, Summer Pneumonia and Plan B

2010-07-29T13:16:00.001-05:00

The sweet little boy I wrote about last week has a family! A paper-ready family was found for Monroe and God willing, he should be home by Christmas! Now, only about two million more to go!

Sweet baby M has pneumonia (since Tuesday). E also now has a high fever and runny nose, too. I’d like to personally thank the idiotic parents who insist upon bringing their sick kids to daycare jacked up on Ibuprofen and Tylenol to disguise their fevers so they can share their funky diseases with all the healthy children. Our daycare, like most others, has specific rules related to illnesses. As long as there is no fever and only one symptom they don’t send the kids home. M is kept “secluded” to some extent, but I suspect a lack of good hygiene on the part of the teachers is responsible for the transfer of germs. FRUSTRATING!! It also saddens me that parents don’t care enough about their kids to keep them home when they are ill so they can heal. I digress…..

I saw a quote a couple of weeks back – actually when Kevin and I were out on our date. I saw it on a coffee mug or something and when I read it, I felt like someone had just summed up my life in one, short sentence. It said: “Life is all about how you handle Plan B.” For some strange reason, saying it out loud brings an eerie sense of peace to me. Maybe it sounds silly, but it gives me courage to think about doing things that I would not otherwise consider and reminds me of all the things I’ve already done that were “not according to plan.”

When I look back on my plans for my life – none of them included living in a tiny community of 700 people, working full-time in a lab, and adopting three special needs children of different races. My plans most certainly did not involve driving a minivan! I recall picturing myself married, with two kids who looked just like me, living in a moderately sized city, driving a sporty SUV, taking vacations and wearing semi-stylish clothes. What I don’t recall is imagining myself as happy or as satisfied as I am right now. Every day I wake up amazed that I am Mom to the greatest kids in the world, married to the most wonderful husband in the world. I don’t have any desire for that sporty, new SUV or new clothes. I don’t miss going on big vacations. I love, and I do mean LOVE our home and our sleepy, little town. Don’t get me wrong, it’s not all roses and sunshine, but for the most part, I am truly happy. There is one area of my life that plagues me; one thing I desperately want to change – I (we) feel courageous enough to set out to do it, now. We pray we’ll receive non-judgmental, unconditional support from those closest to us, but know that even if we don’t, we will be doing what’s best for the little people that are most important to us. In the coming months, there is likely going to be some big changes for the Fenske Family. I’m a little scared, a little uncertain and at the same time, quite excited. Stay tuned………………

Birthday Pics

2010-07-25T17:00:00.007-05:00

We had a little party on her actual birthday. This is what seizure-free happiness sounds like in M's world. It started coming out about a week ago and is music to our ears!

You want me to wear WHAT???

Okay, fine, take the picture, but I'm not happy about it.

Unfortunately, she fell fast asleep before the cake. She does it without much warning these days. Sweet big brother helped her blow out her candle, though. :)

The legs of a dancer!

First swing at a pinata.

What an exhausting day!

PLEASE help if you can!!

2010-07-23T07:08:00.003-05:00

I beg you to go to this link and read about this incredible little boy. If you or someone you know is considering special needs adoption, this little guy may just be the child you're looking for. His situation is critically urgent! Please post to your blogs - perhaps by getting the word out, we can find this little guy's family.

http://www.nogreaterjoymom.com/2010/07/im-pleading.html

Happy Birthday, Doll Face!

2010-07-20T11:51:00.004-05:00

One year ago today a great fighter came into this world at 25 weeks gestation weighing a hefty 1lb 7oz, measuring a whopping 14in long. Little did anyone know she'd not only survive her birth, but survive resuscitation, 3 1/2 months on a ventilator, 3 intraventricular hemorrhages, 14 neurosurgeries, sepsis, 2 throat surgeries, catastrophic epilepsy, cerebral palsy, and cortical vision impairment. She was born with a future so uncertain, in fragile health and with no family to love her. No one could've imagined that tiny person would grow into such a strong (19 lbs 26 1/2 in), loving, amazingly spirited little girl. I am so in awe of her every day. I am in awe of all she's been through and all she continues to go through. I am in awe of her smile and her giggle. I'm in awe of how hard she works and how determined she is to get her uncooperative little body to do the things she wants it to do. Mostly I am SO GRATEFUL that she found us. I cannot imagine my life or our family without her.

Happy Birthday my sweet, gorgeous Doll Face!!

I promise to post birthday pictures soon!

A Great Weekend

2010-07-19T07:49:00.002-05:00

Date night was AWESOME! It was so nice, and to be honest, very strange to be out without children. I took Kevin HERE and it was really cool. The food was incredible and the show was great!

Yesterday we spent the whole day together as a family. We looked at 8 houses and realized that apparently no one cares about their homes like we do. So many of them were filthy and in disrepair. I just don't get it. Most of them didn't have great yards, either. We are so spoiled where we live right now. It made me want to find a way to make our totally unaccessible, raised ranch accessible for M as she grows and nix the idea of moving altogether.

When we got home we got the kids in their swimsuits and spent some time in the pool. I even waterproofed M's central line site with multiple layers of Tegaderm and Aquagard and put her in the little floating boat we bought her. It took some finagling to get her propped up comfortably, but once she was in there, she loved it. She moved and kicked her legs so smoothly and easily under the water. I definitely think we'll be spending some time at "water therapy" - it has to feel great on her joints and muscles. We played outside a bit, grilled out and had a great Sunday evening.

Keeping it All Together

2010-07-15T22:00:00.002-05:00

It is a well known fact that, on average, 50% of marriages these days end in divorce. That is a HUGE number, I think. It is, however, a little known fact that 85-90% of marriages involving the raising of a child with special needs end in divorce. 85-90%! That statistic is staggering! We've been told in the past related to surviving infertility and making it through difficult/lengthy adoption processes – “this will make or break your marriage.” We’ve survived both-quite gracefully I might add! I guess I never gave much thought to it with regards to raising our children.

People ask us all the time how we do it. We don’t really ever have a good answer. It is life – our life – that we chose – we just do it. We don’t really know anything different. I can see, though (hindsight is always 20/20), that it HAS changed our marriage. I can’t say that it has damaged it, ruined it, made it unhealthy or unhappy; it has just made it.........different. I realized recently that the last time Kevin and I spent any time alone together was on our flight to New Orleans on October 31, 2009, to adopt M. Yes, it is true – that was the last time! This is due in part to the needs of our children (having one hospitalized for 10 straight weeks didn’t help), in part to lack of finances, in part to being just plain too exhausted, and in part the difficulty of arranging care for a child with multiple medical needs. It’s not that I don’t trust people; it’s that people don’t get how significant M’s needs are. They look at her and see that she’s cute, she’s chubby, she smiles, she sleeps, she eats, she poops, typical baby, right? They don’t understand that she could have a shunt failure at any moment, that she could be exposed to an illness that a “healthy” child could fight off but would land her in the hospital, that pulling her arm or leg the wrong way to dress her or lift her up could pop it out of it’s socket because her joints are so loose or cause her great pain because her muscles are tight. They don’t understand that losing a couple drops of her medication could mean that she spirals into a pattern of seizures that we can’t get controlled, or that her vision impairment makes changes to her environment much scarier than for sighted children. It is exhausting to try and “prove” to others that she has significant needs; that they can’t “blow off” what I’m saying as me being an overprotective mother or a worry wart.

It is not that we don’t love each other, that we don’t enjoy each other’s company, it’s just that “we” has taken on a whole new meaning. I don’t really like to use the word “sacrifice”. That insinuates that I feel we’re missing out on something and I really don’t feel that way. We don’t vacation, we don’t eat out, we don’t buy new clothes, we don’t drive new cars and I’m okay with all of that. I don’t need any of those things. What I NEED is for my family to be happy and as healthy as possible. M’s new medication has really brought her out of herself. She interacts, is smiling and is laughing. Those moments make the hours I spend on the phone fighting for coverage for equipment and medications all worthwhile. Just last night I said to Kevin, “I honestly don’t care how things end up as long as she is able to find happiness in her own way.” That doesn’t mean I’m going to stop fighting for her or looking for treatments to improve her life and health. It just means that there is nothing more important than happiness and joy.

I realize that goes for me and Kevin, too. Without our health, happiness and mental stability, we are not going to be able to continue to give 100% to our family. We are obviously still struggling a bit to find the balance. That said, we are….get this….going on a date!! Yup – I made the decision last week that one night out alone together would be a very good investment. I can’t give you any details because it’s a surprise for my darling husband, but I have no doubt it will be a great evening!

Meet our new friend........

2010-07-01T20:21:00.010-05:00

SABRIL

Under normal circum-stances I am NOT one to count my proverbial chickens... you know how it goes. I will admit, I am one who traditionally worries about the 'what ifs'. That said, today was a VERY GOOD DAY! We deserve to celebrate it! For the last two days, her clusters of spasms have been better. She is still having them, but they are nearly undetectable - to the untrained eye, that is. She has been...get this...awake, alert, SMILING, squealing and today, in like five minutes time, she learned how to eat! Yup - you heard it folks - she is EATING FOOD before her first birthday!!
(No, she is not feeding herself, but likes to play with the spoon while she eats). She is also sitting up in this chair with only the aid of a seat belt, tray and a couple towel rolls. THAT is amazing in itself!!

We had an awesome eval with an actual, real live rehabilitation physician who was incredible! She is getting us hooked up with absolutely everything we could ever need. For starters, M is sporting a "Johnny Cool" (yes, that IS it's real name) thumb splint - VERY stylish. Amazingly, her little hand is open and relaxed, not clutched into a tight, painful, little ball. The clonus in her left leg is a little worse and she is now showing it in her right leg as well. Previously her entire right side appeared unaffected. For now, because of her small size, we're holding off on braces, but they will most likely come down the road. We are going to up her stretching and PT to try and keep her a little looser.

To top it all off, she has been sleeping - ALL NIGHT LONG!!!!

I know to the mom with an "average" child, these things seem trivial, but to me - they are incredible miracles!!

We're praying we continue to see improvement or at least stability for a while.

I just bounced back to read THIS. As I said back then: BRING IT!!!!!

Two years....

2010-06-25T14:07:00.009-05:00

...that you've been waiting

...and we've been trying

...that you've been suffering

...and we've been hoping

...that you've been alone

...that we've been praying

Happy birthday, sweet girl. Thank you for being strong. Thank you for being patient. Thank you for keeping your spirit in spite of your circumstance. I hope one day that you will feel the love of our family. I hope that you will look back and realize that even when you were all alone, we never stopped thinking of you and fighting for you.

Your brother (with a little help from Mommy) made you a wonderful purple cake. Hopefully next year you can be here to celebrate.

We'll never give up on you!

Comic Relief

2010-06-20T13:20:00.006-05:00

People are forever asking us how we do it, how we hold it all together, how we stay so laid back and optimistic in light of our......challenges. Here's how and why:

Yup - found him up on the kitchen table one particularly stormy day "practicing" for a tornado.

Working out is hard to do, but she always does it with a smile/grimace on her face

Ready for take off, Daddy

True love

So, so tired.......

Such a great "daddy". (Yes, he's back in the patch :( )

Our Shortest Hospital Stay Ever

2010-06-17T18:51:00.010-05:00

At 9:00 this morning we checked in to the hospital for what was supposed to be a 48-72 hour video EEG in hopes of finally naming the the type of seizures M has been having. Her seizures have become more frequent and more severe in the past several weeks despite new medications and increased doses. She got "wired" by 10:30 and at 12:15 they came in to disconnect her as they had "plenty of information." When there are enough events to provide "plenty of information" in less than 2 hours, it certainly can't be good news. We were discharged and sent back to the clinic where the dreaded Sabril starter packet was waiting on the table in the exam room.

What our hope was, was that M has been having myoclonic jerks. What she is indeed having are literally hundreds of Infantile Spasms per day. Basically, there are two options - don't treat and wait for them to resolve knowing that with each one, she is suffering additional damage to her already severely compromised brain function; or treat them with Sabril which carries great risks of its own. We opted to treat them. Approximately 1 out of 8 of the children our Neurologist has treated has not responded. Hopefully M is one of the lucky 7.

There is A LOT involved with starting this medication, a lot of waivers to sign, monitoring to be done. IF it works, we can expect to see results in as little as a week. Dr. D says that when it works really well, these kiddos just suddenly "wake up" and "come alive." We're praying for that outcome.

The very unfortunate side of this is what lies ahead. Because of the extent of M's brain injury combined with complications of prematurity and underlying seizures, she is at extremely high risk of developing Lennox-Gastaut Syndrome down the road. We can't think about that just yet, but it's hard to ignore once the knowledge is there.

Just words

2010-06-16T18:50:00.004-05:00

Today we had some very important (and long awaited) appointments. Here are phrases a parent hopes to never hear from her child's doctors:

spastic cerebral palsy
....we'll have to wait and see
grossly deformed brain
....we'll have to wait and see
significant brain damage
....we'll have to wait and see
extensive encephalomalacia
....we'll have to wait and see
significant visual impairment
....we'll have to wait and see
will never walk
....we'll have to wait and see
may never talk
....we'll have to wait and see
severe global delays
...we'll have to wait and see
low cognitive ability
and yup...you guessed it....we'll have to wait and see

...and that's not even all of them.

At some point, one just shuts down and realizes they are only words. Our neurologist asked me if I was "one of those parents" who wanted her to paint a fluffy, optimistic picture. I told her I was the polar opposite of fluffy - I wanted it straight and scientific. That's what she gave me, and I appreciate that. What I know is that the only solid truths we have right now are that:

1. her hydrocephalus is currently stable
2. there is permanent damage - we already knew that
3. we'll have to wait and see - we already knew that, too

To quote one of my favorite geniuses:

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" — Dr. Seuss

So, we move on to the next phase of this journey - fighting like hell. There is nothing we will not do for our kids. We will go to whatever lengths necessary to ensure M has every resource available to her.

BRING IT!!

The Numbers are in.....

2010-06-14T08:30:00.001-05:00

....and they are frightening! My total cholesterol is 235, triglycerides 129, HDL 38, and LDL 171. I'm a walking time bomb just waiting for a heart attack or stroke! What's going to make me happier than anything is watching these numbers go down.

A New Ticker

2010-06-12T06:00:00.000-05:00

It's called accountability (or public humiliation depending on who you talk to). In any case it's probably the only thing that's going to help remind my fat butt to stick with the program. There's a new ticker at the bottom of the page. Yup, just like a few million other Americans, I am F.A.T!! It is time to grow up, face facts and get myself healthy again - for myself, my husband and my kids. All the excuses have kind of fallen flat - I can't blame fertility treatments (2006) anymore or my "recent" (2008) hysterectomy. I've not carried and given birth to any children so there goes that excuse. I just plain love to eat and just plain have to get over myself. I've been at it for about a month (on again, off again - as is typical for beginning anything) and have managed to already shed a few. It's amazing how good you feel when you start getting rid of the sugar and processed crap we stuff ourselves with. I've got a looooong way to go so help push me blog buddies!

IT happened....

2010-06-03T06:00:00.000-05:00

...and I really wasn't prepared for it. M and I stopped at the pharmacy yesterday to pick up a couple of her prescriptions. As is usual, they goofed in getting them ready and we had to wait (for like THIRTY MINUTES) so they could fix them. We took a seat in the tiny, little corner of four chairs. Moments after we sat down, a little old man came to the pharmacy with who I presume was his son. They glanced in our direction, the son smiled. The little old man did not. They requested their prescriptions, which they hadn't called in ahead of time, and were told to wait for a bit. The son promptly walked over to have a seat by M & I only to be grabbed by his father (who shot a look my way) and pulled him away. The son whispered something to his father who again glanced our way, whispered something back to his son and that was that. So, they stood - about five feet away from us in the middle of the pharmacy for 20 minutes. Now, perhaps I am being oversensitive. Perhaps it had nothing to do with my beautiful, African American baby. Perhaps the little old man had a terrible case of hemorrhoids and didn't want to sit down. Perhaps he kept looking our way because he was bowled over by how stunning we were. Somehow, I doubt any of those explanations are true. However, being that I couldn't be sure what the problem was, I couldn't say anything. Come to think of it, I'm not really sure what I would've said. Call me naive, but I just don't expect to encounter that type of behavior this day and age.

Pictures

2010-05-30T11:32:00.005-05:00

Sorry I've been so terrible lately about posting pics of my cuties. There's been lots going on!! Here is M's Baptism and E's (sniff) preschool (sniff) graduation.

Success

2010-05-22T06:00:00.000-05:00

Surgery went great - 4 cysts found, treated and hopefully will not return. M was a champ - as always! It was great to see our AFCH "family" again, and especially nice to only spend 1 day there! We got home yesterday and all is well. She's sore, but eating well and not too fussy.

Surgery Number 16

2010-05-19T06:00:00.000-05:00

We're really racking them up this year! M will be having throat surgery tomorrow morning at 9:00 CST. Surgery is always risky and always a little scary, but this time, no one is touching her brain and THAT makes Mama happy! Her ENT will be exploring her throat and treating the cysts or granulomas or whatever else he finds that is plaguing her. She had a scope two weeks ago and we could see a couple little intruders high up, but he thinks there may be more further down. Hopefully whatever he finds, he can successfully treat with this one procedure and she will heal up quickly. She has been pretty miserable for about the past month. We should just be spending the night and coming home Friday - a totally novel experience for us! Please say a little prayer tomorrow for M and Dr. McHottie. (Sorry, Honey, I had to throw that in there).

2010-05-17T18:00:00.000-05:00

Kyrgyzstan's interim leader is on Facebook. The other day, this was her Wall Post:

Roza Otunbaeva

To the 65 families that are waiting to adopt their children - thank you for your emails of support. We are working on the resolution of your cases to the best of our ability. We understand your concerns, but please be patient, your families will be reunited.

A glimmer of hope? Maybe.............

Happy Shuntaversary Dolly!

2010-05-13T17:00:00.000-05:00

Yesterday marked THREE months since M's last shunt revision. She's never gone more than a few weeks. Today we also saw her neurosurgeon who was beaming - literally smiling from ear to ear when he saw her and told me how great her scans looked. He is thrilled, we are thrilled, and hopefully all will continue to go well for our little angel. We have a six month pass from neurosurgery - hope we can make it! :)

Our waiting angel......

2010-05-11T06:30:00.004-05:00

I started this blog back in 2008 to follow the adoption of our second child from Kyrgyzstan. In July 2008, we received the referral of our daughter. It was our hope that she would be home with us in just a few months to begin the life-saving medical treatment she desperately needed. Twenty-two months later, she is still waiting. She is waiting and suffering because of selfishness, bureaucracy, ignorance, and the heartlessness of "The Powers That Be." For nearly two years, we have been kept quiet and have been warned to be "politically correct". I am done. I am done protecting the people that are directly responsible for ruining the lives of so many children. We received pictures from the orphanage this past weekend and they were horrifying. We have submitted to every request, every requirement, paid every fee along the way and yet, these children are held hostage. We are constantly reminded that these children are not "OURS". They "belong" to Kyrgyzstan. Those people needs to be reminded that they are not possessions, but innocent human beings. I know there are people that will be angry for my posting this publicly. Get angry - I don't care. Frankly, MY daughter; MY innocent, little girl; is languishing in an orphanage. She is malnourished, neglected and being deprived of the care and love we have been committed to and longing to give her. There is no end in sight - she may never come home. I want to introduce her to the world - she deserves to have a voice and she deserves to be known.

FOUR!

2010-05-08T05:59:00.003-05:00

My son....my hero

2010-04-24T08:00:00.001-05:00

It's surreal to me to look at this little man and believe that today marks three years that have gone by since we first met. The orphange sights, sounds and smells are so fresh in my mind. I can still feel the butterflies I had in my stomach while walking up to the door and standing in the room waiting for the caregivers to bring him to us. I also vividly remember the fear I felt when I saw him for the first time. He was so pale, so fragile, so absent looking. Mostly, I remember the great sense of peace and relief I felt when we walked out of that orphanage a family of three. Our time in Bishkek was truly magical. Our time in Almaty was....so....not....magical, but a necessary part of the journey. Stepping off the plane in Chicago, we almost fell to our knees with joy that we were ALL home.

Every single day, MY SON (my heart still skips a beat that I get to call him that), amazes me. I'm amazed at his spunk, his spirit, his intelligence, and at times, his sass. More than anything, I am amazed by his resilience. He has been through more in his short life than most of us will go through in all of ours. While we can still see occasional traces of his past, of institutionalized life, most people would see nothing more than a wild, crazy, happy, super smart, normal, 4 year old boy.

I have learned so much from this little person. I have learned to live in the now, to not waste a single moment because each one is so precious. I have learned that despite what society says, it's okay to be different, to be individuals. I've learned that there are no hardfast rules when it comes to raising kids. My son wants to spend his days writing letters and numbers, pretending that everything (and I do mean EVERYTHING) is a railroad crossing gate, and playing with calendars instead of footballs. That's okay! My four year old suddenly wants to sleep in our bed and I don't see anything wrong with that.

I have no idea what the future holds for my little man. I have no idea what he'll decide to be or what kind of wild rides he will take us on. I do know that I will hold his hand the whole way (whether he wants me to or not); I will support him, love him unconditionally, and do whatever I can to make his life as happy and satisfying as it can be.

So, I want to tell my son today:

"Thank you! Thank you for the joy and laughter you bring to me. Thank you for all you have taught me. Thank you for loving me and allowing me to love you. Thank you for being strong and waiting for us to come for you. I love you with all my heart and I am so grateful for you!"

April 2007

April 2008

April 2009

April 2010

Newsweek!!

2010-04-22T08:24:00.001-05:00

http://www.newsweek.com/id/236778

SPONSORED BY:
A prospective mother with the child she hopes to adopt walk the grounds of an orphanage in Kyrgyzstan in 2008. A Long Way From Home
After two years, prospective parents hoping to adopt children trapped behind bureaucracy and chaos in Kyrgyzstan are running out of hope.

By Laurie Rich Salerno | Newsweek Web Exclusive
Apr 21, 2010

A Long Way From Home
After two years, prospective parents hoping to adopt children trapped behind bureaucracy and chaos in Kyrgyzstan are running out of hope.

When the news broke about Torry Ann Hansen, the Tennessee woman who pinned a note on her adopted son and sent him alone on a plane back to Russia, Pennsylvania pediatric nurse Ann Bates composed a one-word e-mail from her Moscow hotel room. It said: "Seriously?"

That was the most that Bates, who was in Moscow to meet the 18-month-old boy she was in the process of adopting, could muster. Thanks to Hansen, it looked as though Bates's Russian adoption was going to be suspended. But this was frustratingly familiar territory for her. She and 64 other U.S. families are already mired in an endless-seeming battle in Kyrgyzstan to bring home 65 orphans whose adoptions were nearly finalized almost two years ago but have since been held up by obstacle after obstacle. To wit: two days before the Russian announcement that Hansen had sent her son back, Kyrgyzstan toppled its own government in a bloody revolution.

"I was sitting in the hotel room just bawling the first night, worried about Bishkek and my friends there and the little girl I hope to one day call my daughter," said Bates, who started the adoption process for the Russian boy in 2009, after mounting obstacles left her fearing she would never be allowed to complete the Kyrgyz adoption. She still hopes to bring both special-needs children to the U.S. "The second night, I heard about the Russian thing. I just couldn't believe it." That's when she sent her e-mail to the other waiting parents in the Kyrgyz group.

In the days since Russia announced a temporary freeze on American adoptions, these 65 families have watched the flurry of media coverage and rapid U.S. government action that's followed: the State Department will send a delegation to meet with Russian officials on April 29 and 30 to smooth over the crisis. In response, many of them have echoed Bates's sentiment of "Seriously?" For all the attention being given to people who might have their adoptions frozen, lost in the noise is the struggle of the families adopting from Kyrgyzstan who have already spent almost two years stuck in a dark comedy of errors.

"I am absolutely supportive of [the U.S. State Department] doing those things [in Russia]. I feel for all those people," says Lisa Brotherton, a California woman trying to complete the adoption of a 23-month-old Kyrgyz girl with cerebral palsy with whom she and her husband were matched in June 2008. "But where's the white horse for our kids?"

It was right around June 2008 that Kyrgyz adoptions began falling apart. Up to that point, the number of American adoptions of orphans from Kyrgyzstan had been increasing for four years, with 78 in 2008, compared with just one in 2004, soon after adoption from Kyrgyzstan first became available. (In 2003 a Colorado woman working in a Kyrgyz orphanage petitioned the government to bring a toddler with severe facial deformities to the U.S. for reconstructive surgeries. After the successful surgeries, she worked with the government to formally adopt the child, opening the door for U.S. adoptions.) Ironically, many prospective parents who had been seeking to adopt internationally wound up in Kyrgyzstan because of the comparative ease of requirements and speed of the process.

After they were matched with and visited a child in Kyrgyzstan, many of the families were told that their adoptions would be completed within weeks. Then a quiet freeze took hold of the process. Scheduled court dates in late summer and early fall that were necessary to finalize adoptions were postponed again and again, but waiting parents were told that their cases would likely be resolved soon. "We all really believed that at the beginning of the year, things would turn around," says Suzanne Boutilier, a California advertising copywriter hoping to complete her adoption of a toddler.

Weeks pushed into months until Feb. 2, 2009, when Igor Chudinov, Kyrgyzstan's then–prime minister, called a moratorium on all international adoptions. He cited fraud and abuses of the system by orphanages and adoption-agency liaisons, and said his government would investigate these cases, work with UNICEF to start drafting new laws for such adoptions, and consider joining the Hague Adoption Convention, the international treaty designed to set consistent and transparent country protocols for international adoptions.

That's when the 65 prospective parents whose cases were stuck in the pipeline contacted the U.S. State Department for help. "I applaud them," Boutilier said of the Kyrgyz legislators. "I would never want to find out after the fact that I adopted a child that wasn't legally adoptable. Unfortunately, it's caused an incredible delay." Time is vital for many of the pipeline children who have disabilities and other special needs—everything from severe cleft palates to cerebral palsy—and the adoptive parents want to address these issues medically as soon as possible. They also fear that the kids will develop attachment disorders and other emotional and intellectual issues that commonly result from growing up in an institution. A study out of Boston's Children's Hospital, the Bucharest Early Intervention Project, found that children raised in orphanages had on average significantly lower IQs and higher rates of mental illness than those raised in family-type environments. "In my nightmares it's going to be another few years [before the adoptions are processed]," says Brotherton, "and we're going to get her home and we're going to have to deal with all the stuff that happened from the time we met her as a 3-month-old until then."

Although the State Department did not send a delegation, as with Russia, it did host a small group of Kyrgyz legislators in Washington and introduced them to some of the waiting families last May. In June it sent a U.S. adoption expert to the country to meet with Kyrgyz lawmakers. And then, after a few more months of inactivity, adoptive parents thought they got their big break.

Prime Minister Chudinov was headed to the U.S. for the U.N. General Assembly in September, so the waiting parents lobbied their respective representatives, asking them to press their cause with him when he was in the country. Both Kansas Sen. Sam Brownback and Pennsylvania Sen. Bob Casey met with the prime minister on behalf of the stranded orphans. According to Brownback's office, Chudinov declared that upon his return he would tell the parliamentary committee in charge of adoption legislation to expedite the 65 waiting cases.

Three weeks later, Kyrgyz President Kurmanbek Bakiyev dissolved his cabinet, forcing Chudinov to resign. The waiting parents were crestfallen.

Proposed deadlines for the Parliament to present and vote on new adoption laws came and went. This February three waiting parents, including Brotherton and Boutilier, went to Kyrgyzstan with an international-adoption advocate to meet with members of the Kyrgyz Parliament, the ministries of health and education, and UNICEF. They also saw almost all the 65 pipeline children in their orphanages in Bishkek and outlying regions, and were able to take pictures and provide updates to the parents waiting stateside. When they left, the four had little hope that their trip had truly changed things.

To their surprise, a month later, on March 19, the English-language news agency 24.kg reported that the Kyrgyz Parliament had passed the bill addressing adoption by foreigners. But two weeks later the rumblings of unrest that would eventually foment the overthrow of President Bakiyev and his administration began. As a result, the Kyrgyz Parliament and the entire administration, which had each spent nearly a year and a half working on the issue, were dissolved, and a new government is now being built, piece by piece.

A U.S. State Department official said that "we are working to determine the provisional government's stance on the pending cases, and the status of the bill and the related draft regulations. We will continue to urge the Kyrgyz government to resolve the 65 cases."

But the families don't know where the bill itself lies, whether it will be enacted by the interim government of former opposition leader Roza Otunbayeva, or whether they'll have to wait for what many are saying will be six months until a new government is elected. Or whether anything will happen at all.

Rich Salerno is a freelance writer in New York specializing in Central Asian affairs.

Please Pray for the People of Kyrgyzstan

2010-04-07T13:37:00.000-05:00

Political unrest....yet again. This does not bode well for anyone, especially our waiting children. Click Here to read the story.

As Promised

2010-03-21T11:14:00.004-05:00

BAD Blogger

2010-03-19T06:06:00.000-05:00

Sorry......I've been neglecting my blog terribly. I know, I still owe pictures and I promise as soon as I am able to take a breath I will get some uploaded. There seems to be a lot going on. M is doing well - tolerating her IV antibiotics (2 more weeks), eating, pooping, doing all the stuff she should do. She continues to have swelling around her posterior shunt, but her neurosurgeon has assured us he's not concerned about that and expects it to resolve on its own. Her MRI last week showed improvement in some of her ventricles, although her temporal horns are still enlarged. it's early, though. Her Echo showed that there is still vegetation on the end of her VA shunt catheter. Neurosurg wants to finish antibiotics, wait three weeks, do blood cultures, another Echo in May and reassess at that time. So, we just keep plugging along. She is still having nystagmus pretty much constantly and doesn't want to focus and track with her eyes. She sees ophthalmology next week and Neurology the following week. It's possible she's having a lot of subclinical seizures. In any case, I hope we get some answers soon.

E is loving life now that the snow is gone. It's crazy - one week there was like 6 inches of snow covering the ground and the next week it was all gone! It's been nice enough to go for a walk the last couple of nights after supper, ride his bike, draw on the driveway. Life is good!!

We have some really difficult decisions to make regarding K. There are new rumors regarding proposed new legislation that could put our completion of her adoption at risk. There is also a huge decision to be made that affects her medically. We are in such a tough spot right now.

I promise to update soon - WITH PICTURES! Happy spring everyone!

Home Sweet Home

2010-03-03T09:10:00.002-06:00

Yup - you read it right - we are ALL HOME!!!!! At the risk of jinxing things, I'm going to say just one time - M is doing so great! In an effort to rescue her VA shunt catheter as well as her Hickman, the ID and Neurosurg docs have chosen to extend her IV antibiotic course to six weeks. Because of that decision, the decision was made to allow us to do the remaining five weeks of IV antibiotic infusions at home. Let me tell you after TEN, yes, TEN long weeks in the hospital, there is nothing like having all four of us under one roof again. I promise to catch up on pictures and other stuff soon. Today is Neurology and Pediatric appointments for E.

Septicemia

2010-02-24T10:24:00.001-06:00

Three.

More.

Weeks (at least).

Close, but no cigar

2010-02-22T18:54:00.003-06:00

Not today anyway. The plan, which I have not really discussed much for superstitious reasons, was to go home today. Beginning Saturday, M started having fussiness and abdominal.......issues (I'll spare you the details). The abdominal issues have resolved, the fussiness has escalated to epic proportions. A shunt tap today yielded results consistent with a shunt infection. An EEG revealed many sub-clinical seizures during the course of the test. Labs revealed a sudden, dramatic elevation of her liver enzymes. That's a lot of crap (for lack of a better word) to find the day you're supposed to be discharged after a two month stay in the hospital.

More tests, more discussion, pediatric hospitalist consult, blah blah blah. I spent the entire day preparing for the worst, but hoping for the best. We got it, the best that is, in the form of a severe bilateral ear infection. I know most people won't understand this, but I nearly jumped for joy when those words were uttered. Okay, yes, I feel terribly sad for M that she has to endure such pain, but seriously, an ear infection - that's so....NOTHING! This girl has had 14 brain surgeries in the past 4 months. She has had 3 brain hemorrhages. She has been in the hospital for 6 of her 7 months of life. An ear infection? We can oh so happily manage that!!

There is still that chance that she could have meningitis brewing again which would lead to the shunts being removed, ventriculostomies placed, antibiotics for two weeks, new shunts placed, etc. etc. Essentially, we would start over - AGAIN. Our neurosurgeon feels quite confident at this point that that's not the case. We sure as hell hope he's right!

As for the subclinical seizures, as many as she had today during her EEG could definitely cause irritability, confusion, and lethargy. The neurologist increased her Keppra and hopefully we will find a nice, stable dose for her.

M will get an abdominal CT tomorrow to rule out any liver problems or infections. As many VP shunts as she had fail and the 2 that were consecutively infected could mean that something is/has been brewing down there.

So, we're close - as Kevin says we're just "perfecting", tweaking things so that when we walk out of these doors we will have absolutely no reason to come back anytime soon.

Yesterday, we took E to the model railroad show in town. It was pretty incredible. What a fun (and expensive) hobby! He is a train junkie and enjoyed it so much. I think he really felt special that he got to have Mommy AND Daddy all to himself for a few hours. Truth be told, Mommy and Daddy enjoyed it quite a lot, too!! I so look forward to the day when we can do something with our entire family.

Last night I was pleasantly surprised to find new pictures of our beautiful, K, courtesy of the traveling Kyrgyz mamas. She's so big and still so bright and happy looking. She is one strong girl, I have no doubt about that.

Hopefully tomorrow brings good news for me to share. Sorry for all the picture-less posts lately. I can't upload here and I haven't been home for more than a few hours at a time this last week. Precious time that is best spent cuddling with a snuggly, silly, little monkey. I promise I'll catch up as soon as I can. :)

I Love My Village

2010-02-17T14:55:00.004-06:00

In my last post I talked about villages, communities, other cultures who live to support each other. Even in our face-paced, selfish society, we have villages of our own. They are made up of friends, family members, congregations, coworkers, neighbors, and sometimes even complete strangers. Today I was reminded of that.

For the last 2 1/2 years I have been proud and blessed to be an employee of an incredible health care system. I enjoy my job, I have great respect for my employer, and I love my coworkers. Sure, we all have "those days", but for the most part, I don't have anything to complain about. Today, I was presented with another incredibly generous gift from team members throughout the health care system. Team members that I currently work with, used to work with and some whom I've never even met. I was reminded yet again that there are those in this world who are compassionate and inherintly good, unselfish people. THANK YOU!!

M returned to surgery this afternoon. I cannot tell you how many this is now in the last 2 months. This time she went 6 whole days - a new record! We are in limbo - it has been 2 months that we've been living apart, half of us in this hospital room, half of us at home and working. Yet, the world goes on around us. We've been living on one income since October and that causes a great deal of additional stress. We are at a point where we have to decide between paying the mortgage, buying food and diapers, or paying other bills. Today's gift has taken the burden off for a while longer and for that we are so grateful!

In talking with the Hospital Health Psychologist today(who apparently was sent to make sure I didn't need to go to the rubber room) I came to a conclusion. It's not only the fact that it's hard to be here, hard to watch M suffer over and over again, hard to have our family separated, hard to not know how long my job is going to be there waiting, hard to figure out where the money is going to come from; the lack of control is excruciating! I am, by nature, a control freak. I thrive on schedules and knowing what's going to happen when. I have NO CLUE what each day is going to bring. Will it bring seizures, toxic drug levels, another surgery, more scans, new medications, new nurses, new residents, new medical students. I have to tell M's story over and over and over again. I have to submit to others' ideas and probably the most exhausting, I have to fight every day to get people to listen to me and believe me when I tell them there is something wrong. I have to be my daugter's advocate because she can't do it for herself. I have zero privacy, strangers in and out all day and all night, a bathroom door that doesn't close tightly and definitely doesn't lock. I have to rush through a shower whenever a convenient moment presents (and some days it doesn't), rush down to get a bite to eat not when I'm hungry, but when the schedule allows. I know I could leave her with a nurse or a volunteer, but I choose not to. This is no way for a person to live, yet I feel I can't and shouldn't complain. I have to be grateful that we have such excellent care.

So, that's where I stand today - I'm frustrated, sad for my girl, but overwhelmed with gratitude for the generosity and compassion of others. I truly do love my village!!

Sorry for the delay

2010-02-16T07:08:00.003-06:00

Thank you, Ann, for the gentle reminder that I've been too quiet these last few days. So, what's been going on?

We're still hanging in there. We're still a family separated; two of us 60 miles away and 1 of us 6000 miles away. We're getting by and maintaining a shred of sanity.

For the last almost eight weeks we've been blessed to have more prayers sent up and good wishes passed on than we could ever imagine. We've been blessed to have excellent doctors and supportive family and friends to see us through this. About a week ago, however, we were given an incredible gift. It's not often in our country that we see true compassion and unselfishness at work. In other countries we see it all the time. In the face of tragedy whole nations, communities, villages drop everything to come to the aid of their fellow man. It's not often in our society that people sacrifice for others with no expectations of receiving something in return. Sure, we talk about it a lot, but how many of us actually do it. That is exactly what has happened for our family. We have been touched by an angel - an individual with true unselfish compassion, an individual who dug deep and realized that when someone in your "village" needs help, you drop everything and come to their aid. We have received not only an amazing gift from this person (you know you are), but renewed faith and spirit at a time when both have been waning. "Thank You" seems insignificant, but I guess that's part of our "we must return the favor" mentality. Truth is, we can't possibly return this favor, we can only accept this amazing gift and say simply, publicly "THANK YOU FROM THE BOTTOM OF OUR HEARTS!"

M is doing well. We are out of the PICU and truth be told, I want to go back. I'm not comfortable on a regular floor. I miss our nurses, I miss having residents and doctors around all the time, I miss being able to get something done immediately instead of having to wait all day! I digress......It's been four days since her last surgery - a current record. She had an MRI, and dye study yesterday and her shunts appear to be functioning well at this time, with the exception of one trapped temporal horn. I won't go into detail, but my hydro parent readers get it. Not sure yet if there's going to be any intervention for that. Our neurosurgeon feels best at this time to let it go as long as it is not causing her problems. I think it IS causing problems, but that's a battle I will have to fight. He plans to possibly do a repeat dye study today through her other shunt just to ensure we get the whole picture before possibly starting to talk about going......H-O-M-E. She has had an extremely difficult time adjusting to the anti seizure medications. She's been pretty much sleeping nonstop. M still does not have use of her left arm/hand and her left leg is weak. She still needs a lot of "support" with eating as her sucking is poor. It's impossible to tell how things will pan out long term. She has been through so much this past 2 months.

E is continuing to be a trooper through all of this. He is definitely having some significant (new) insecurities. He cannot be left alone at all. You can't leave the room, go to the bathroom, take a shower, nothing. It has carried over into school where he launches into a complete meltdown if his teacher is out of sight. I feel so guilty and it breaks my heart that he feels like he's going to be left by any of his loved ones. I know he's resilient and in five years he won't even remember this, but right now, it's so hard to watch him struggle. Other than that, he is doing incredible with school and is learning more each day. He has starting pitting Mom and Dad against each other. Since we are all never home at the same time he will do something inappropriate, be reprimanded and chime in with "Oh, Daddy lets me do it." Yeah right! He had his neuropsych evaluations in January. He definitely has Sensory Processing Disorder and possibly ADHD, although I'm not a fan of the ADHD diagnosis - I think it's WAY overused (go ahead and flame me if you wish). I definitely see the SPD, and have since he came home almost 3 years ago, but he is also an almost 4 year old LITTLE BOY - they are supposed to be hyper and a little crazy! We have tools and resources available to work with him on his sensory issues, but as for medicating my 4 year old - ABSOLUTELY NOT - NO WAY,NO HOW!!

K is still hanging out at the BBH waiting for her family to come and rescue her. She received a very special visit this past week from 3 beautiful, talented waiting Kyrgyz mamas who travelled with the president of JCICS to Bishkek on Feb 5th. Their goal was to meet with as many government officials as possible to get our plight heard. They have been extremely successful! They have worked so hard for the children and waiting families and we are so grateful to them. February 15th was the "magic" day that Parliament was supposed to hear and vote on adoption legislation. It was the day we've been waiting for since oh, last fall. It came....it went....nothing happened - BIG shock there (insert sarcasm). While I do have renewed faith that these adoptions will be completed....eventually, I am still frustrated to no end that "my" little girl has to sit and suffer.

So, that's it in a nutshell. We're hanging in there, waiting to all be healthy and home together again.

Membranes, Adhesions and Shunts oh my

2010-02-11T21:01:00.002-06:00

So, after a day of extreme fussiness, lethargy, seizures, EEG, CT scan, more fussiness, even more lethargy and a helping of bradycardia M's neurosurgeon decided to take her to surgery tonight instead of waiting until tomorrow morning.

His response to surgery is usually "it went great", "things look good", etc. Tonight his response was a tentative "it went....okay." Not good enough, but it's what we get this time. It seems my girl likes to quickly build up membranes and adhesions and close all of her little pathways off so her CSF cannot drain properly.

Ultimately, the surgeon felt his and her best option at this time was two shunts. Again, not ideal - 2 shunts means 2 more sources of potential complications. Hopefully this will be the answer for her, though.

For now, we wait, as always, to see if she develops problems or if....dare I say it....we actually get to go home soon.

Seriously....

2010-02-11T11:10:00.002-06:00

...why can't she get a break? Back to surgery tomorrow..............

Surgery Number......

2010-02-10T07:37:00.002-06:00

.....ugh - I can't count them anymore!

Anyway, M should be heading down to surgery within the next hour. I'm hoping with every part of my soul this is the last one for a very long time. I have to admit, I am N-E-R-V-O-U-S this time. After everything that has happened (i.e., gone wrong) over the last two months, fear is getting the best of me this morning.

There, I got that off my chest, now back to sending positive energy into the universe.

What a difference a day makes!

2010-02-06T18:47:00.002-06:00

Thursday & Friday
Saturday

Leap forward, baby steps back

2010-02-06T09:27:00.002-06:00

Good news is that M was extubated last night and handled it like a champ! She had a very brief period of difficulty, but then settled in and rested fairly comfortably. The bad news is that this incident has left her with some neurologic damage. She has lost a lot of function in her left arm/hand as well as her ability to suck. She is being tube fed and we are "practicing" a lot with the bottle. She is definitely interested, she just can't quite make it happen....yet. There is a possibility this is all transient and function could return. Only time will tell. She is not as interactive as she was before and I haven't been able to coax a smile out of her yet, but it is still early. The important thing is that she came back to us - that is all we have ever asked. We're really good at facing challenges and she is one tough, stubborn girl. We're hopeful that with intervention, therapies and a lot of hard work we'll make great strides.

Ghana Court Day

2010-02-05T09:32:00.005-06:00

Shout out to blog buddy Michelle and super-husband Keith as they head to court today for the adoption of their beautiful daughters, B & V. Sending positive vibes to Ghana for the issuance of a full adoption decree today!